I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.
We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
“Yes.”
I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.
“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?
The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.
Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”
I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.
The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”
I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”
She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.
I hope you are disturbed, troubled, distressed, and pissed off when you read this. I hope you share it with many, many people. Although I did not know this yesterday, this is very common and happens across the map. I have researched and researched and researched transplants and the MR, as they are called in the medical journals, and it is appalling. We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.
To see how this article went viral, check out this post: http://www.wolfhirschhorn.org/2012/01/amelia/a-life-changing-event-for-a-greater-population/.
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Chrissy, you know that I have two daughters “labeled” as Cognitively Impaired. I never once questioned whether or not they would be approved if they should need a transplant; despite the overwhelming medical issues each one faces, I always believed that with the proper supports, both Amanda and Kaylee will grow to live long, happy lives…even if they are unable to fully understand everything that goes on around them. This story is incomprehensible to me. It amazes me that in a world where politicians are not afraid to stand behind policy that argues how precious and valuable every life is before birth~ even those with serious medical conditions or complications~ that after birth, the same conditions do not apply…that a “medical professional” can dictate the life, and death, of another human being. It is not acceptable, and I will join you in this fight. After all…Mia’s fight could be Amanda’s. It could be Kaylee’s. It could be someone else’s child. And it is time for humanity and compassion to preside over a rule that is as inhumane as it is immoral! xo
I know you are considering other doctors, but please, consider other COUNTRIES too. I’m sure there’s excellent doctors in countries other than US too, and laws and regulations that will not DISCRIMINATE Mia.
I’m sure there are many people who will be willing to support you in this, me and my family included.
Thinking of you.
I am sorry your guys had to go through this, that must of been so heartbreaking! Hoping that you can find a wonderful medical team that will advocate for your daughters best interest and see beyond the label of mental retardation. It seems so scary to have to run to the people that are there to help our children yet have them turn you and your daughter away! God bless Your little Mia!
Wow…sounds like you need to contact 60 minutes or some other media source. This is absurd to me! She has every right to life, as any other person does. I’ve never heard that this would be an issue. I imagine most of the public is the same. This needs to be out there so changes can be made! Good luck to your whole family! I hope something can be done!!
Unbelievable!!! They are trying to play God with a precious little girl!!! How unprofessional, how unethical, how DARE them!
This is a heartbreaking story and I hope the decision can be reversed – lots of support here and on facebook is it possible to collect it all together or set up an “e-petition” to present to the doctors?
I am completely shocked. As someone who has gone through kidney transplants with her two children, who have many other special needs, I can’t grasp what you have just written.
So wait…if my son’s mental illness was discovered before his transplant they wouldn’t have done it because when he’s 30 he could be raging and go off his transplant meds? Or what if my daughter isn’t employable because of her vision and ends up on disability? Should SHE not get a transplant or a 2nd one?
This is the most disgraceful thing I have heard ever come out of a doctor’s mouth.
I am not kidding – I will gladly come up to Philly to argue your case with you – as a transplant mom, I would fight with you to make this happen. Happy to hook you up with our team and a 2nd team we consulted.
I haven’t heard something so upsetting in such a long, long time. I’m in tear for you.
I thought the same thing about getting this to the media, this is outrageous. I really believe that the majority of people in our country would still find this outrageous.
This both breaks my heart and enrages me.
TAKE IT TO THE MEDIA IMMEDIATELY! In the meantime, we will all be praying hard.
This is crazy. All of Leo’s doctor’s are at CHOP. Please let us know what we can do to help you fight this! I can’t believe this is happening in the USA let alone in our backyard.
I’m so sorry to ear this it makes me so upset, Mia has the rigth to get in the list I be praying to find some doctors who will do this for her you have all of our support God bless all of you.
I can’t even believe it’s true. I believe you heard that but if she has just as much chance of living as anyone else then I don’t understand why they wouldn’t allow you to donate your own kidney. Appalled.
Crissy and Joe
My heart goes out to you and little Mia she is a beautiful young lady and deserves the same kind of medical treatment everyone else gets first rate doctors and care. I am apalled at the doctors unprofessional politically incorrect phrases and denying Mia surgery based on this is absurd. It angers me to no end that they won’t do a transplant. I know for fact there are several children in the US that have had kidney transplants with WHS and have thrived health wise since. I wouldn’t even take my child to a doctor that wouldn’t treat her like she is a human being deserving of the very best care he can possibly give and if it were a lifesaving transplant of a kidney that is what she would get and deserve. If you need names of children who have had this transplant done let me know I will get them for you.
Hugs to all of you.
Valerie and Justine
I have no words. So sorry this happened. I’m here from the Bloggess’s Tweet and passing it on to everyone I know. Hang in there, the power of the internet is amazing and something *will* happen.
Count me in, too. Julia and I will carpool up to stand beside you and read them the riot act. My son is also cognitively impaired – which does NOT mean he doesn’t have the right to the same medical treatment every other person in this country would get. Shameful!
I am so very sorry you had to be part of this. I cannot comprehend their thinking. My own daughter has autism. I also have a daughter with Type 1 diabetes. There but for the grace of God go I. And I am ashamed of these doctors. And ashamed of CHOP. And I write a blog. And I will do everything in my power to spread the word about this to others. This is shameful.
Personally, you should write to Altschuler, isn’t he the head of CHOP? I would call the Inquirer. I would call news outlets. And if you need me to protest with you, I will march on CHOP with a sign.
I am so sorry.
I got here via a tweet from Julia Roberts. I am a kidney transplant recipient, and I have to say, I am horrified by your doctor. There are just no words for how wrong this is.
I have already heard this; twice; and it just doesnt happen with the handicapped mentally. The first time was when they removed my fathers’s only working kidney and refused to consider transplants even tho his family was willing to donate..he was too old at 73. Then was informed that my grandchild who is mentally and physically handicapped [had half his small intestines removed] was not a candidate for a transplant….but certainly we could donate his. He is doing well with out one. Yes we are a caring nation…. except where the handicapped are concerned .
I am appalled. And heartbroken. And furious. I found this link posted by a special needs momma on facebook, so I don’t know you at all and I’ve never visited your blog before. But, I do have a daughter who is mentally retarded, autistic, and physically disabled. And I’m trying to imagine what would this conversation would have been like had I been in your shoes. Every detail you shared about your response was exactly what I was feeling as I read it. I’m overwhelmed with anger and grief that there are doctors who believe our special needs children don’t deserve the same options as our typically developing children. I am praying for your family…
There was a case in Massachusetts about 15 years ago, where a young woman with Down Syndrome sued for a heart transplant. I believe she won her case. Please get a lawyer ASAP.
As the guardian of a man with Down Syndrome, my heart aches for you.
Please contact me if you truly want to bring media attention to this. Rosy Stefanatos- google me. RosyStef@gmail.com
That’s horrifying!
Have you checked with a lawyer? Denying a transplant due to intellectual disability may be a violation of the Americans with Disabilities Act.
My heart sincerely goes out to you. I recommend that you get in touch with a lawyer. You WILL win the case.
You need an advocate. An attorney, a spokesperson, a media resource. . . SOMETHING. Outrageous.
I have no words, just wanted to tell you that lots of people are reading your story and are heartbroken for you and your beautiful baby. <3
I am speechless. He’s been WARNED about parents who are INVOLVED with their child???? This is disgraceful. I’m so sorry you are going through this.
I wanted to tell you our experience. I had a daughter with both cystic fibrosis and Down syndrome. She got really sick last year and we talked with the transplant team. She did not make it and died a few days later, she was just too sick. But we were told that her down syndrome would NOT keep her off the transplant list. So this is not a universal practice. In our time at the hospital, we also knew another little girl with Down Syndrome who was on the heart transplant list. I can’t say for sure if any kids with DS have gotten transplants here but I do know that they are listing them.
My heart goes out to you
I can’t image being in your position, but I do agree you should try other countries. I wish there was something I could do.
If you do decide to try other countries and need help with raising the funds please contact me and I would be happy to help with whatever I can. NPrevost@RemaxPrestige.com
As the mother of a six year old daughter who has Down Syndrome, my heart is both broken and outraged by your story. I will keep both you and your beautiful daughter in my prayers.
I feel physically ill after reading of the situation and how you were addressed. Frankly, I would not only go to the media, but I would report the SW for unprofessional behavior for her snotty and completely unfeeling handling of the situation. Besides, has she never heard of such things as custodial guardians and the like if something *did* happen to you and your husband. OMG, I am boiling the more I think about this. And I am so very, very disappointed in CHOP.
I’m trying really hard to understand what I have read….I feel the need to do something to help bring this to light…I don’t usually get involved in people’s life’s,but I’m heart broken….having only meet Mia and her patents through face book and being so far away,we are friends countries apart….
Thinking of you all
Much love
Samm,will,talia,Kira and shai..xx
have you tried dupont children’s hospital? they have a wonderful transplant team. good luck to you and your family.
Thank you for sharing this with us. Maybe it can bring about change. I’m sorry for your pain, and also for learning that this happens so often. I honestly did not think it possible. Please know I will be posting on fb and asking others to repost to spread the word. You have my support if there is anything else I can do.
I am so outraged at what the doctor and the social worker said to you that I am nearly speechless. It’s disgusting on so many levels, And the doctor said that it’s really hard for *him*? Oh, the poor man! How hard it must be to make such a gutless, immoral, and inhuman decision! Let me get out the miniature violins.
Others have come up with some great ideas for how to proceed. You also might consider getting in contact with the people at the disability rights organization Not Dead Yet, who do a lot of work around issues of assisted suicide and euthanasia, and who I think would be very interested in your case. In fact, I’m going to send them the link to this blog.
I am sick. I work in a hospital and I strongly encourage you to not only contact the media, but also start a letter writing campaign to the hospital administration. I will write a letter and so will many others. We will flood their office. You can also contact your state health department and tell them you want to file a complaint against the hospital for violating your daughter’s patient rights by discriminating against her.
What that transplant surgeon is doing in unethical and somebody should slap that so-called social worker upside her head. I am so sorry this has happened.
I was reading your story today while I was waiting at CHOP for GI doctors. It just brings sadness to my heart, that you continue to have to fight for everything for your little girl. I am disgusted with CHOP and their outlook on our children. I know that you will take whatever avenue you need to, to get Mia what she deserves. My family and I are here for whatever you need help in this new endeavor. Sending lots of hugs to Mia and your family
Some doctors are truly great. Some just think they’re God. When my stepson was admitted to an institution after a suicide threat, we went to a meeting with the doctor (and I use that term loosely). They told us what medications they wanted to use. Mind you, I’ve done my research. When I questioned them as to why they’d keep him on Adderall (which can increase suicidal tendencies in children), all they’d tell me was “this is usual procedure.” His birth mother just sat there, silently glaring at me. “So you want to keep a suicidal kid on something that’s been proven to increase the tendency?” I said. “That’s the usual procedure.” Usual, hell. I’m with you, and please give Amelia a hug for me (and take one for yourself.)
What can we do to help? This is wrong on SO many levels!!!!!
CHOP PAtient’s Bill of Rights
http://www.chop.edu/about/our-philosophy-of-care/patients-bill-of-rights.html
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.
Here is the info to file an official grievance witht he hospital, dept of public health and the joint commission which accredits the hospitals and allows or disallows them to operate.
File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting
The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office,
The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.
New Jersey Department of Health 24-hr Complaint Hot Line 1-800-792-9770 Healthcare Quality Strategies Inc.
557 Cranbury Road, Suite 21
East Brunswick, NJ 08816
New Jersey Department of Health and Social Services
Acute Care Survey Program
P.O. Box 360, Trenton, NJ 08625-0360
Phone: 1-609-292-9900
Fax: Office of Quality Monitoring 1-630-792- 5636 Office of Quality Monitoring
The Joint Commission
One Renaissance Boulevard Oakbrook Terrace, IL 60181
E-mail: complaint@jointcommission.org
Phone: 1-800-994-6610
I have fwd your story to NBC 10 in Philly and I really hope they share your story! How do these doctors sleep at night? I am shocked and left shaking after reading your story. My niece has low functioning autism and other physical disabilities and I do not believe for one second that her life is any less valuable than other “normal” children! I will be praying for you and your precious daughter.
Hello I just wanted to express my feelings of concern and let you know you are not alone in this fight! I birthed my daughter November 23, 2011 (I live in New Mexico) Sophee Olivia with Full Trisomy 18. Due to the chromosomal abnormality the doctors thought we were delivering at 37 weeks but actually delivered at 35 weeks. Sophee did ok right after birth but about 24 hours after she started to dwindle off. The NICU team here telling me they refused to intubate Sophee that “her quality of life was not worth the resources!” These words “not worth the resources”, actually came out of a doctors mouth. So here are my husband and I sitting, holding our daughter who is suffocating to death and doctors all around unwilling to help. Unwilling to do a procedure on a baby (because she has a diagnosis and she is not compatible with life) that they do on many premature babies daily. For crying out loud there were over 8 children that had been intubated for several weeks! But here we sat with doctors all around us telling us their refusal to help! My husband and I left the NICU and went to the room, began calling every one we could, posted on facebook…I guess I should add this fact…by now it is Thanksgiving Day! How are we going to get anything accomplished on Thanksgiving day? Who s going to help us…Our daughter is going to die on Thanksgiving is all I could think to myself. So after the posting phone calls started rolling in…we had people all over the country calling the hospital, contacting lawyers and behold a miracle walked through that door. A lawyer was there and present to remind these doctors of the oath they took when they received their license to practice…and that was to treat all individuals..They took a hypocritical oath? Let me tell you that within an hour our daughter was intubated and we were given the usual run down that if she didn’t come off the ventilator with 48 hours they were removing her from life support to die…well to bad for them that lawyers know more and that legally they could not remove Sophee from life support with out a signed consent. We went in every day and assured their was NO DNR! in her chart that was sneakily put in there by an attending who didn’t agree with our treatment or that Sophee would have a “quality of life” and that this situation was futile” I am telling you I know the anger you felt in those words…becasue I tooo have felt that anger. Sophee came off life support all on her own! We left the NICU with the pediatric heart doc assuring us noone would ever touch our daughters heart..EVER! And that there was NO ONE is the state that could do the surgery anyhow and so we would have to go out of state and insurance would never cover this and and and…(I am skipping around here without all the details becasue I want to get to the hope!) and you can contact me if you want! So we leave and the moment we get home I start researching heart surgery and contacting other doctors all over the U.S.A. and got more then one willing to repair our daughter’s heart! Wow more then 1!!!! Sophee went into heart failure in February adn needed that heart repair sooner then we expected which left us in the Pediatric ICU and a hear surgeon (wait the other hospital had told us that there were no heart surgeons in the state!) who was out of town and a group of cardiac doctors…who would meet that next Tuesday when the surgeon returned to discuss if they thought the heart surgery would improve the quality of Sophee’s life and possibly extend the amount of time she had to live…We got our answer the next Tuesday…with no promises of how she was going to do after the surgery but that they would repair her heart! That they thought it was worth trying to see if we could take any distress from her and improve her quality. My husband always put it this way…”as long as we have a dog in the fight, we are going to fight…and until Sophee tells us different we will find a way to get her what she needs! We spent a lot of time in those silly conference rooms with us having to reiterate over and over…doctor after doctor that we were not crazy, we knew Sophee had trisomy 18 and what our goals for her were…which were simple…love and be loved! So start your search! Find that one doctor or that more then 1!!! who is willing to help! Check in the Miami Flordia area! They are doing incredible things over there! Check here in NM…and find a lawyer! Best thing we ever did! and know you have many people prying for you and your daughter! Blessings and feel free to contact me if you ever need anything!
I can’t believe a doctor, let alone a social worker, would actually use the words “Mentally Retarded” in this day and age. On behalf of all “involved” parents of children with health issues – you rock, and you’re my hero. Keep fighting. They’re wrong. You’re right. Someone will help.
I read your words and tears fell down my face in utter and complete shock. Then I got angry. Really seething angry at the doctor, the social worker, and the entire hospital.
As a mother of 2 sons on the severe end of the autism spectrum I fear for my children’s lives from pedophiles, cars that speed down our residential street, and bullies but NEVER would I have expected to have to fear the doctors and their close-minded view of what their life is.
I am sharing this with EVERYONE I can get to listen. Please do call your local news company…this story must be heard.
I am in the Philly area and I am so sad to read this. What a horrible thing to do to your family. I am willing to write letter or whatever you need.
I’m appalled. I thought doctors were supposed to fight for each individuals life, not sit in judgement. And I’m sharing your story, hoping that one day this won’t continue to be the case – though, I’m horrified that this is happening at all in the year 2012.
My heart aches for you and you will be in my prayers.
Doctors Think They Know Everything.. THEY DON’T, They Said My Daughter Will Be Basically A Vegitable, And Shes Improved Sooo Much, And Besides Noone Knows What New Therapy Or Treatment Will Come Around…. Everyone Has The Right To Live Life To The Fulest And NO Doctor Should Have The Right To Decide… P.S. Shes Soo Adorable
This is heartbreaking. Please take this to the media. I have to believe that this type of discrimination is illegal. And please contact a lawyer and your congress representatives. If this isn’t illegal we need to get laws in place to make it so. I might be able to understand a quality of life argument if you were getting organs from a transplant list, but not from a family donor. This is just appalling! It reminds me of the Nazi argument for murdering cognitively impaired people. Surely our country is above that kind of behavior!
I am sick to my stomach reading this! Infants get transplants all the time and no one KNOW they have mental retardation or delays yet! So now we should just let every child die because we won’t know if they have delays or not?
We had been told our son would be stillborn or die at birth. Then when he was 3 weeks old we were told he had to start dialysis,. but they didn’t recommend it because he would never learn, never grow, never develop. We moved him to another hospital in another state…a hospital that would at least give him a chance at life.
My son has autism and was quite delayed in development. He was born with kidney failure, spent 4 years on dialysis and I donated a kidney to him. No one every brought up his delays as being a reason not to transplant!
I’ve been one of the moms that people are “warned out” and that’s just tough! Our children have no voice of their own, so we must make sure their needs are heard!
We ended up going to a different hospital than where my son was getting dialysis because they wouldn’t consider me to donate due to my history of depression!!! UCLA was totally fine with me donating and with Bryan getting a transplant, even with his delays. He is now almost 20 years old and almost 15 years post kidney transplant!!!
I’m so sorry to hear there are still idiots out there who feel that if you are anything less than “perfect” you don’t deserve to live…. I hope you can get your daughter her transplant. Don’t let anyone tell you no, there is SOMEONE out there who is waiting to tell you yes…..
OH MY. I am totally speechless. This is just soo wrong. You really need to talk to a lawyer and some kind of advocacy group that can help you. This is wrong on so many levels.
I just can’t understand how that can be legal (sorry not from the US … Australia).
I hope that you go out there and get the transplant and prove this ignorant doctor wrong.
I have no words as I sit here and look at Mia’s beautiful face but I do have lots of prayers going up for her right now. I am also going to send this to our TV station and I am going to send it to our state representive here. I hope and pray to the almighty God that he sends the right people your way and that you get what you need for Mia and her life.
I am absolutely appalled and horrified. My son has a rare disorder that can affect the heart & liver. What if he needs a transplant one day? What if a team decides he’s not worthy of life because VLCADD is incurable?
My heart goes out to you and your precious Mia. I am sharing this with everyone I possibly can and I hope this makes CHOP sit up & take notice. This is ridiculous & smacks of eugenics.
Please let me know if this is the doctor. We want to write letters to the hospital. A lot of parents have written their support on CHOP’s facebook page. Hope any of this can help… http://www.chop.edu/doctors/baluarte-h-jorge.html
Where can we write to? Which would be the best option? What about starting an online petition and letting it spread like wildfire on facebook? This is completely unacceptable. These doctors do NOT get to decide who will and who will not live.
At least you still have a right to go to another doctor. While I agree that it is an awful reasoning, one cannot force the doctor to give you service, otherwise he becomes your slave. This is ultimately your decision to give your child the care she needs, and no one else should stop you from seeking it, but by the same token it is ultimately the doctor’s decision to decide who he will give HIS service to.
I’m happy to write a letter if you let me know where. this is awful. Also maybe start a petition on change.org?
I don’t have words for how awful reading this made me feel. And if I feel this badly, as the mom of a perfectly healthy 6-year-old with autism, your pain and outrage have to be a million times greater.
The walls may be made of brick right now, but I hope that sharing your story brings a bulldozer your way that can push them down and get your sweetheart her transplant. Anything else is unthinkable.
I am so saddened to read your story. I wish you all the best in the future and hope you can find a physician that is capable of compassion. You better believe if this was that Dr or social worker’s child things would be different for them.
oh my gosh! i am absolutely apalled by their attitudes!! i cannot believe that this is anywhere close to being acceptable!! with everyone running around now days trying not to “hurt people’s feelings” when it comes to war and holiday and all of that- i cant believe these people feel an innocent mentally disables CHILD doesnt have the “quality of life” to live! i would lawyer up, if at all possible!! i live in nashville, and i am certain there would be a doctor willing to help with this transplant at Vanderbilt Children’s Hospital. Maybe give them a shout. I am sorry you’re dealing with this, and sorry for the doctor and social worker for their lack of compassion for your sweet daughter.
Go to change.org and start a petition. I’ll bet if you get enough people writing the hospital and telling them how appalling this is, they’ll do the transplant.
I’m mad! I’ll help you in any way. Let me know who to write. I have a special needs daughter that I’m sure he would deem unworthy and I know her life is valuable to her and many others, especially her daddy. If you are doing the donating, she should be doing the receiving, period.
I am appauled by this Doctor and this committee. My neice has the same rare disorder as your daughter. My neice is only 10 years old and has touched more lives than most people do throughout their life. I am humbled every day by her. She has more love than any person I have ever met. Her quality of life is the same as my 2 healthy sons. I would give anything and everything to ensure that she would have what she needed, to be here as long as GOD allows, not man. I pray that God opens these people’s eyes to see that they are not the judge of who should prosper in the world and who should be left to die. I pray that you continue your search. I know you will find a Doctor who sees how wonderful and how precious her life is. Please do not give up hope. Thank you for sharing your story and I am sorry that this is something that you had to endure.
This is shocking and just plain horrible. I’m so sorry you and your family are going through this.
First of all, your daughter is BEAUTIFUL. And a gift to this world.
We have a 5yo daughter born with a chromosome 4q deletion. She had multiple medical issues at birth and sadly, we were told not to expect much.
However, like your brave and mighty fight for Amelia, we chose to do everything we could to get our baby girl whatever care she needed. To included multiple surgeries, feeding tube, open-heart, etc.
Today she is thriving because of the care she did receive… regardless of her developmental or intellectual disabilities. This experience of yours is infuriating beyond human measure. The evil you were faced with and the darkness with which so many of us would choose to have responded ourselves to such a horrid, inexcusable being charged with doing no harm – clearly you and your husband had angels with you in that room.
You have the love and support of all of us special needs parents who hear your story and say your daughter is our daughter. We hear you. We support you. We pray for you.
Never give up. Amelia is a blessed little one to have such amazing parents.
I wrote on their Facebook page, I’ve shared the story, and I’ve added you, and the many others facing this difficulty, to my prayers. I can’t imagine someone not helping my daughter. https://www.facebook.com/ChildrensHospitalofPhiladelphia
I hope I have the right hospital, but I Googled it given the information and left a comment on their feeback page:
http://www.chop.edu/contact-us/chop-contact-form.html
Praying for Amelia to get the care she deserves.
Shawnele
All I have to say is:
First they came for the Socialists, and I did not speak out —
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out —
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out —
Because I was not a Jew.
Then they came for me — and there was no one left to speak for me.
Well, actually Martin Niemoller said that, but maybe someone should pass it on to your transplant doctor.
I have heard that some children with Down Syndrome have had the same battle with regard to heart transplant, but that it is slowly changing. Please let us know who can deluge with letters and emails!!
This simply can NOT happen.
I am stunned, but unfortunately, not surprised. I am in end-stage kidney failure and HUP (CHOP’s sister hospital) rejected my one matching family member as a donor, not for medical reasons, but to PROTECT THEIR SUCCESS RATE STATISTICS. I’m sure you are taking all sorts of action, but may I suggest you call the transplant program at Lankenau (in Wynnewood)? They are a small program, and as a result give very personal attention to their patients. I am queued up for a transplant with them in the next month or so. Email me and I will send you the contact info for the coordinator there. rwellsfischer (at) hotmail (dot) com
I’m so sorry for what you are going through.
As a mother of a child who recieved a kidney transplant from his father almost 13 yrs ago and praise Gid is still doing great I am sickened to think that a dr would dare say those things. I pray that you will find the right place and drs and she is able to receive a kidney. Our hospital is absolutely wonderful as well as the drs and staff it’s in Ga Children’s Healthcare of Atlanta. May God Bless
I am so sorry. Your story has lit a massive, raging fire inside me and I have shared the link to this blog entry to every national news station and program I could find email addresses for. I have no doubts you will fight this. My prayers are with your family and your sweet Mia. Never give up!
For the past 7+ years I have been researching the US human organ transplant system. My research conclusion: The Transplant SysteIn This Country is Broken & Corrupt!I am also the grateful recipient of an altruistic, non-related, living donor, kidney transplant. As my donor and I were on gurneys about to be wheeled in to our operating rooms a surgeon whom I had never met stopped the surgery. I fought back with media and lawyers. Only through local, national, & international media exposure did I get that life saving surgery 7+ years ago.
Amelia’s story is not unusual. The worst city in the US for lack of ethics in transplant medicine is Philadelphia. Albert Einstein Medical Center did this to, Dolly Carew, a single mother. This week Christiana Care Health Services in Delaware did it to a lady for no valid reason except she had advocated for herself and found a matching living donor, a female USMC vet. Dolly founfd a donor in Indianapolis.
Calfornia Pacific Medical Center & Stanford Medical Center have all refused to perform perfectly legal & medically indicated organ transplants. This is denial of access to care and unethical. Read about more such atrocities at http://www.innovativestrategies.us and follow transplant corruption messages on Twitter @ESRDguy
There is now a petition on change.org:
http://www.change.org/petitions/chop-special-needs-individuals-deserve-life-saving-transplants-allow-the-liver-transplant-amelia-needs-to-survive
I am sharing this widely and asking others to do the same.
Let’s shame these people into being human beings.
You can also leave a message on the CHOP Facebook page:
http://www.facebook.com/ChildrensHospitalofPhiladelphia
I’ve contacted Not Dead Yet, and they will likely have a piece on their blog tomorrow.
Unfortunately as cost of medical care rises, we will see more of this. The resources are finite, they will develop cut off lines in many diseases. We will not be doing open heart surgery on advanced age patients, we will limit more transplants.
The way it used to be on kidney failure, there was a private committee who reviewed candidiates based on their fitness for transplant, financial, physical, mental, emotional, and you never knew why you were denied. These patients did not qualify for medicare then so they had to be able to foot the bill for their anti rejection drugs, as well as other post op treatment. The surgery was paid for my private insurance. If you did not have insurance you did not get a transplant.
So I fear we are headed back to the old ways of deciding who gets the available organs. It is a sad commentary of the day.
Noone has addressed the issue of what if there are two kids and only one kidney? How would YOU decide who gets the kidney? If you have a child with MR who needs life long care or a child who has normal functional abilities and may grow up to have an independent life. How do you choose? flip a coin? would that be fair? I am sorry, but it is survival of the fittest. I am on the doctor’s side on this one.
If anyone else is outraged by this story, here is a petition:
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive
Please sign. If Amelia and her loved ones can see this, the Tumblr social justice people have gotten involved. The petition is being widely disseminated. Who are the specific people we should contact at the hospital? What are their email addresses?
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive#share
Petition!
I am frankly sickend to read this account. My child is also disabled and knowing that these practices are standard makes me sick. There are not enough words in my vocabulary to describe the rage inside of me at the thought that this precious baby’s life may end because some people think that a child who is disabled does not matter. We have to do more than talk about it before it is our child’s life at stake.
I understand the anger many of you have, but we still must use reason and not just take action solely on emotion. A lot of the people on the comments are recommending legal action, I disagree with this.
1. I do not believe in forcing others to do anything, no matter what the justification is.
2. as a person with a disability I would not want a doctor to work on me that was forced to do so.
3. I would not want to give patronage, nor trust, to one who judges my care that way.
4. there are always other good doctors.
Look in your history books! This is how Hitler started his campaign of genocide. The “infirm” children were deemed “life unworthy of life.” America is supposed to be a nation that stands up to protect and care for those who cannot speak for themselves. Keep fighting, take the story to every media outlet you can think of, and make the doctor and hospital look like the judgmental, uncaring fiends that they are! God Bless you!
I don’t know you but I read this via fb. I am so sorry. What can be done? It sounds like you need a lawyer. This is so upsetting to me I am speechless. If their is a action to be taken please blog.
OMG that cannot be legal! I feel like throwing up after reading this. Can you bring a lawyer and a tape recorder to the next meeting?? How can this be legal. This is barbaric! Inhumane! my God what’s wrong with this “doctor”! I’d go as public as possible with this. Til the only job he can find is scraping gum off the sidewalk!
I sent a note to the hospital letting them know how disgusted I was in their decisions. I hope you are able to find a hospital that will treat her like the human being she is!
I have forwarded your story to a friend who works for the CBS station in Philadelphia. He has printed it and given it to the assignment desk. I hope you don’t mind. I just felt like I needed to do SOMETHING.
Amelia is beautiful.Stay strong and fight hard.Please let us know what we can do to help in your fight. I cannot believe that things like that this happen. It is appalling.
I just called the hospital, and the Nephrology department is closed until Tuesday. Their phone number is 215-590-2449. I know I’ll be calling.
For the record, denying your daughter a transplant is against the Americans with Disabilites Act (ADA). It is federal law, and the ADA prohibits discrimination against those with disabilities. Perhaps you should remind him and his “committee” that if they continue to disallow your daughter access to the same medical interventions as those without disabilities, they will be in violation of federal law, and subject to losing their license. I think that might change their mind. If it comes to it, I’m almost CERTAIN you could find a lawyer to act pro bono and legally “rough them up” a bit.
Which hospital did this, what was the doctor’s name? This man needs to get so much attention from this issue that if he is not forced to do it, then someone else will step up and do it in his place. Letters to Congressmen need to be written, policies need to change. This needs to happen now, because if they have done this to you, then they have done it to others and it will continue happening until there is so much public outcry that the behavior stops. It HAS to stop. What they are doing is EVIL.
I hope you don’t mind but I have put this on my sons FB page https://www.facebook.com/ElijahPruneBelly he was born with Prune Belly Syndrome and is now down to only 1 kidney…he also suffered brain damage in the neonatal period and has development delays due to duplication of chromosome 8. He too has been denied surgery to reduce his kidney reflux, to reduce the size of his bladder, to perform a Mitrofinoff so I can drain his now 2500cc bladder to prevent further kidney damage but he also would be faced with the same issues to get a transplant…in our country they don’t say no but they give people a rank based on points…he would loose points for having the same issues as Amelia and sadly in our country people aren’t allowed to donate their children’s organs if they die so demand is HUGE. He WILL die of kidney failure đź™
I am horrified by the callous attitude of the staff at CHOP. Horrified, but not necessarily surprised. My daughter has a physical disability and we have consistantly changed physicians to find those that are compassionate and willing to work with her. My heart goes out to you and I add Amelia to my prayers. I would suggest 2 things, send your story to all the top pediatric hospitals in the country, with alot of luck, a physician with a heart will read Amelia’s story. Also, if you don’t already have one, an attorney or at the very least an expert in child advocacy should be at all your future meetings.
How do they sleep at night? They should rot on Earth. Rotting in hell is too good for these people
I have tweeted, retweeted, signed the change.org petition, FB’ed this (2x), and posted it on various parenting message boards.
CHOP should not underestimate the power of an angry Internet.
My prayers are with you.
Hi. I am a special education major and will be working with children who have ‘mental retardation’. This appals me! Who can I contact to help you? This doctor and social worker should have their licenses revoked!
I find this sick sick sick. A year or so ago a child molester. rapist. was given a kidney transplant.
He was convicted, served his time, is now a level 3 offender registered for life. To disabled to work, but was given the precious gift of life.
I find it disgusting they would refuse an innocent child, one who never caused harm, yet give this man one, after it was proven he harmed several. THIS is why I will never donate unless it is a directed donation.
This is an infringement of basic human rights, as stipulated by the UN:
UN Convention on the Rights of Persons with Disabilities:
Article 25 – Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.
Article 10 – Right to life: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
So there are many things that upset me in this story. I am a kidney patient myself. I recieved my first transplant at the age of 5. I have so many questions about this situation. Like has this little girl done the treatment that reverses kidney failure? its not promised to work but its wortha shot. Another thing, I was put on Anti-Rejection medicine to prevent my kidneys from failing the first time. Depending on the disease she has this could be another option. Why haven’t these doctors tried other routes. The only thing i agree with is that the medication you get put on after transplant is harsh. im 19 and they expected me to be in “LOW” classes with learning support… i never had to and i did graduate on time but the medicine does wear you down mentally and physically. I am appalled that you cant even have a live donor. I feel horrible. These doctors dont even seem to have good bed-side manor. I think this amazing little girl and her family should check out Dr. Charles Kwon at the Cleveland Clinic in Ohio. He and the social worker Melanie are amazing people. They work miracles.
This is exactly what the eugenics program that sterilized folks who did not meet certain bureaucratic criteria between the 1930s and 1970s was about. The proponents of that program, many who were/are Nazis, are now paying big bucks in reparation– hardly enough. Criminal charges should be brought against CHOW.
This is exactly what “rationed healthcare” (Obamacare) is like and will be like….only it will be way more widespread…if you are “old” they will calculate how many years you might live and the dollars and figure out if the medical care (not just transplants) are “worth the money.” A thirty year old with a good job will be considered a better “investment” of health care efforts/costs than a fifty/sixty year old needing the identical same procedure.
For those who are recommending starting petitions on change.org, please realize that change.org is in favor of Obamacare, which will make these policies a permanent part of healthcare, and will affect not only children like this, but also the elderly. Remember Obama’s “take a pill” logic for not giving an elderly woman an operation in her advanced years?
This is just appaling…since when does a doctor have “the final say”? God has the final say!
So a child is mentally retarded means a death sentence? What happened to killing murderers? Since when do we let the innocent die? Are we really that bloody uncivilized that we do such horrid acts? Really?
EVERY child has a right to life! EVERY child! Born AND unborn, with or with “defects”. Matter of fact, should we not be trying even MORE to help those with those defects so that they can live a longer life instead of throwing them to the perverbial curb to be trashed? What the hell kind of person lets this happen?!
Your daughter is beautiful, I will pray for her and your family.
Is this Dr H. Jorge Baluarte? I have 5 boys whom are “mentally retarded.” It’s a valid diagnosis but you can also say I have 3 blondes and 2 brunettes… valid.
One of mine has been on life support twice, and another has had a transplant.
My children are all such blessings, and have at young ages taught the world much and touched hundreds of lives.
I, too, thought we lived in the United States.
Dear Friend, I also have a child who is mentally disabled, and we live in the Philadelphia area. One of the great things about this area is that we have several children’s hospitals to chose from. My daughter sees all of her specialists at A.I. Dupont in Wilmington. We see Dr. LaRosa in nephrology. We have liked him very much, and he has always been aggressive in her treatment and in trying to determine where there are problems and how to improve the quality of her life. Please, take Amelia for a second opinion. Do not keep butting heads with the same ignorant bastards. There are other options. You will be in my prayers
I’m afraid this in only the beginning of the “Death Panels” that will be deciding our medical care in the near future.
I will keep your family in my prayers. I can’t believe that doctors think they have the right to decide whether someone is worth saving. At an ethical standpoint I think there has to be some sort of rule they are breaking. Please let me know anyway I can help. Who can I write to?
Please look at pg.661 of the following document. I have not read the entire thing, but it shows that CHOP has done transplants in this type of circumstance. I pray that you find a doctor who values your daughter as much as you. http://nisonger.osu.edu/papers/LWSarticle.pdf
Contact Ombudsman. No healthcare facility ever wants to hear from them. They are the best advocates you can ask for.
This is extremely disturbing and thoroughly pisses me off. I have felt this myself when my daughter was born and needed open heart surgery. The first children’s hospital would not do the surgery because she has a rare chromosome issue as well as bad kidneys. We had her transferred to another hospital and the heart surgeon saved her life. She is two years old and is NOT in kidney failure (as we were told would happen), she does NOT have seizures (which they were sure would happen), her quality of life and our families has NOT suffered (as we were told would happen). I thank God every day that we transferred her to another hospital and I really hope if you don’t get an acceptable answer that you will transfer her care to another hospital that is willing to save her life. I know CHOP is an excellent hospital, but what they are doing to your daughter and your family is reprehensible.
I am absolutely horrified… If you cannot find a match, I would gladly, gladly donate my own if we are a match. My dad’s kidneys failed, and his life was saved because of a donor at the last minute. I don’t want you two to go through the loss of such a beautiful child. Please, email me with more details. I am a 17 year old female, if that makes a difference.
Disgusting. Doctors playing God! Well, I hope God stikes him down and tells him he is not worthy of life because he has a mental disability and a personality affliction. To put it in layman’s terms….a narrow minded, arrogant ass! His license should be revoked, the people have spoken and no one wants to be under his care. He should just give up….his practice will NEVER be perfected!
I am co-director of a nonprofit organization for children with rare genetic disorders, like Amelia’s. I don’t know that there are words to describe how I felt after reading this entry. As a mother first and foremost, but as someone who has been so touched by so many amazing children who may be different, but each have something so incredibly unique and meaningful to contribute to this world, I don’t know how your daughter could be denied this surgery. I wish you the very best on your journey to help your daughter. I shared your link on my organization’s Facebook page. You can look it up by going to Abi’s Place. I thought some of the other parents who have had similar experiences could share their thoughts and prayers with you.
A FB Friend posted this on her wall and I saw it, I read back through the rest of your blog and I’m sitting here in tears, for 2 reasons. 1 – because of what you are going through with these awful drs. who won’t help you, there is NO reason to not be able to do a transplant for your beautiful daughter! 2 – because looking at the videos you posted, you are doing the most wonderful job at raising your sons and daughter, I can see all the love in the world in those pictures! You have a gorgeous family and you all will be in my prayers! The Lord has big plans for Amelia and all is possible through Him!
I am outraged by this story. I have twin boys who both have Down syndrome and if we were in your position I would fight until my last breath to ensure that they got the medical treatments they need. I will fight with YOU for Amelia. I wrote about your story in my blog. http://caseynconnor12409.blogspot.com/2012/01/rise-up-and-fight.html
God Bless your family.
This is absurd! I would involve media as well as legislators! I can’t believe that dr so called dr at that has the audacity to say because she is intellectually challenged she doesn’t deserve to receive a transplant! There has to be someone who can help!
I cannot even fathom what you must be going through. I admit that I know nothing of the disorder your daughter has. What I do know, having four children of my own, as a parent you do anything for your kids.
It makes no sense to me why, if this transplant will not put her in continuous pain by extending her life, which it doesn’t sound like it will, it’s that doctor’s right to determine whether she has a right to live.
It’s downright sickening.
Please contact the Ombudsman. We did on behalf of my mother and a callous doctor. We literally had the head of the department calling us to apologize. They can be your best friend in this. And an attorney…contact one as soon as possible. This is appalling. Many prayers for your family. She is a blessed little girl to have you as her mama! Stay strong!
This is absolutely horrific. They have no right to tell who lives or dies. Sometimes to it has to do with insurance too. It all boils down to money. Trust me. We’ve gone through this ourselves. We live on the other side of PA and have had to take our daughter to Cincinnati Ohio for care.
Trust me when I tell you, take your precious girl somewhere else. CHOP is not the end all to be all. There are other places out there. Keep searching until you do find a better place that will truly care for her. I have heard good things about A.I Dupont. Keep fighting the good fight and find someone who actually cares and wants to do the right thing and help your daughter have a better quality of life.
An appalling truth about our medical community. The parents could have been told all of this at a much earlier stage so that could use their revenues and time to seek other avenues. I would consider this professional and financial abuse by our “modern” medical community. Not to mention a breach of faith (not to mention a breach of contract) considering the Oath doctors are required to take. The Ethics Committee is also not above the law and can be sued.
My heart goes out to this family. I too am a parent of a medically fragile, mentally challenged child. I thought we were the only family that had negative interaction with CHOP. My daughter’s disabilities were caused by a problem during eye surgery at the age of 4 months. This was done at CHOP. No one at the hospital thought it was important to tell us there had been a problem. My daughter’s eye doctor told us many times, “he remembers actually what went wrong that day.” The only problem was he would not testify against the hospital. It is a disgrace that Amelia’s doctor does not know the term used to describe a child or person with a mental handicap. The word mental retardation is a slap in the face to a parent whose child is mentally challenged. It is a barbaric word. Degrading and cold. Maybe he should put himself in Amelia’s parents place. How would he feel if a doctor kept telling him they would not do anything for his child because he/she was “mentally retarded”? I bet his mind set would change and he would find a kinder personality.
I agree with others that have said these parents need to go to another hospital. I to recommend A.I. duPont Hospital for Children. It is like a big family. The doctors don’t just treat the child, they also treat the parents, siblings, and extended family memebers. They speak to you with care, concern, and understanding. The nursing staff is fantastic. They always go above and beyond to make sure families are comfortable and knowledgable with the treatment of their child. Our lives changed 100% once we started having our daughter treated at duPonts.
My prayers are with this family and Amelia.
The “doctor” does not deserve the title or the medical license. This beautiful little girl deserves every chance life just as much as ANY other child. She may be mentally retarded, the “doctor” is socially retarded. This is 2012. It is no longer okay to warehouse children for being different, to let a child die because he or she is different. Any child who is loved has QUALITY of life. It isn’t money, looks or IQ that makes life good. It is the love shared in that life.
This breaks my heart and enrages me. Your daughter is beautiful and certainly more deserving of life than someone who is callous and blindly ignorant.
I shared this on my Facebook and I hope your story will inspire others to call for change.
I am keeping you in my thoughts and prayers.
I just read your post linked from a Facebook friend of mine. I’m appalled. I’m a lawyer in Florida and I have some contacts with the AAIDD (the leading national organization for people with intellectual disabilities (not called MR anymore). I am happy to put you in touch with them. Please email me if you want the information.
My husband is a kidney donor…12 years and counting to a beautiful woman who was on her very last leg of life. I have posted this on my facebook page, and while we don’t have the resources many have posted here, we would be happy to put you in touch with our nephrologists in Indianapolis, IN, who can then refer you to Riley Children’s Hospital in Indianapolis. We are horrified and outraged with you. Your daughter is beautiful and deserves every single opportunity to live as anyone!!! As the mother of two “special needs” kids, the “mama bear” in me is furious with and for you!! We are believing God for a miracle for Amelia!
please do 3 things.
First there has already been a lawsuit over a transplant because the child was deemed not able to be get the transplanted over the MR status..the doctors lost. Second. You may be able to file a complaint with the office of civil rights http://www.hhs.gov/ocr/civilrights/index.html since they take medicaid..it’s a possibility. You can also file with the ACLU..Get a lawyer and SUE like crazy! They are discriminating against your daughter because of her disability..keep cramming that down their throat!!! So sorry!!!!
As the mother of a child who has received two kidney transplants in her short life (she’s 11 1/2 and has been sick since she was 15 months after an MMR vaccination shut down her kidneys), this is absolutely APPALLING. I am totally sickened by what has been said here. There is NO reason for your child to NOT have a kidney transplant. I highly recommend the doctors at A.I. DuPont (as they are associated with the doctors we see here in Florida under Nemours). I urge you to contact other kidney transplant centers. We had our most recent experience with Florida Hospital Transplant in Orlando, FL. They were WONDERFUL and are a great team of doctors who CARE about their patients!!
I will continuously be praying for your daughter and your family and the hopes that she gets the kidney transplant she so desperately needs.
<3
We’re all behind you–this transplant is GOING TO HAPPEN.
I am sooooooooo angry after reading this! I’m appalled that the staff at CHOP treated you so horribly. Your daughter is beautiful and deserves all the treatments she needs just like any other child does. Personally I would highly recommend A.I. Dupont Hospital in Wilmington. We have had nothing but wonderful experiences there. I will be praying for your daughter and your family!
I shared this with my mother, and she asked me to comment for her. Her advice is to contact the Texas (we live in TX) Counsel for Developmental Disabilities, and they can give you the contact information for your local affiliate. My mom volunteered with them for a year or two when they first started here in Texas, and she has done some incredible work in making things more equal for people with disabilities. She also said to tell you that this is bullshit. My advice would be to report him to your state medical board, and file a formal complaint. Also, talk to other doctors–you don’t want someone operating on your baby that feels the way he does. My prayers are with you. God bless.
I also suggest that you go to another “transplant” hospital instead of exhausting your much needed energy at CHOP. Waiting for them to vote against your child’s right to live, at their monthly meeting, will waste valuable time. Perhaps the UNOS criteria needs to be re-evaluated, challenged and changed. For now, time is of the essence. The live donor program may be the option that works for you. If someone donates an organ for a person on the waiting list, but on “behalf” of your daughter, she moves to the top of the list for the next available matching organ. Your friends and family don’t have to be a match for her specifically. A friend was offered an organ with this process.
I’m a nurse practitioner. Don’t waste your time at this hospital, no matter how good it might be otherwise, because you need a place that you totally trust. Cut bait. Find another one…looks like a few good ones have been recommended. Kidney transplants are so common, and there are plenty of places doing them. Make a fresh start. You cannot continue with this facility and be happy or settled in the long run. Even if you went through all the ethics committees, etc. would you really want to go there? Probably not. You need a place where they welcome Amelia and your family with open arms and open hearts. Those places exist. Ask around and you’ll find it. Praying for you and your family!
An attorney who specializes in these kinds of cases and who has a reputation for media-attention and hospital lawsuits could be your best friend in a situation like this. I’m sure the hospital does not want the bad press such an attorney could bring.
This is absolutely horrible and I am so sorry you are going through this.
I can’t believe that they would tell you she has to die.. cause she has mental issues.. I am so sorry that people are that cold hearted and can’t let a little girl live… she is breathing now..and is a human being now.. yes.. she has some developmental issues.. but she did not ask for them. She is here cause God has a plan for her.. and they are robbing her of that plan! I can’t believe it…. they should never be allowed to say whether a sweet little child should be able to live or die based on their mental capacity… That is sooooooo wrong!
Well; I am now genuinely angry at something I’ve read on the internet. This is not acceptable. There’s no possible justification for the treatment your family has received. I can’t really begin to put my anger into words that are of the caliber and decency you deserve, so I’m just going to tell you that I am angry and I am telling everyone I know about this. You deserve better.
This is beyond appalling. I read this through a friend on FB. My prayers are with you, your husband and Amelia. Amelia is beautiful, adorable and precious little girl. She deserves more of life than that doctor. I pray that God will give you the strength and the wisdom to seek justice due to you and your family. After treating your child for three years and taking yours and/or insurance money he has the balls to make those statements.
God Bless and Don’t give up!!
Our son is also mentally challenged as we call it. He was born in renal failure at 26 weeks. He recieved one of my hubby’s kidneys when he was 2. Metal status never ever came into play. We see Dr. Malagon Rodgers at he University of TN Medical center (they do transplants) and we had the transplant at Vanderbilt Children’s hospital in Nashville. Dr Jabbs is the doctor there. Also, eah inaurance company has a transplant speciliasts who are huge helps. Let me know if I can help in any way.
This makes me so angry! I am praying for your precious, beautiful Amelia, that she will have her transplant in spite of this doctor. EVERY child is worthy of life and love.
My Heart goes out to your family.
Chrissy, I am horrified, disgusted, and furious. You are not alone; the community will support you and fight along with you to get Amelia her transplant. I certainly hope that doctor himself comes under review from the ethics committee.
I wish I could say that I can’t believe this, but I need two hands to count how many doctors were willing to just let me die when I was sick. (Luckily I finally found some who helped. But it was a battle.) It makes me so mad that this level of discrimination still exists and that such an a** is allowed to be a doctor. It makes me mad that this is not an isolated incident in medicine as too many of us know.
The thing that gives me hope is the hundreds of messages to CHOP’s facebook wall calling them out on their utter failure. And when CHOP posted some PR statement that didn’t actually say anything, people called them out again. It gives me hope that there are mothers like you (and my mom) who are brave enough fight for their kids even when someone in a position of power threatens them. It’s not threats of violence or anything like that. It’s the sigh and rolling of the eyes, and saying that there is something wrong with you because you love your child. The fact that this happens makes me so mad, but the fact that so many are fighting back gives me hope that it won’t always be this way.
All over the world people are standing up for their rights and making their corner of the world a better place. By posting this article, you are doing your part and then some. Keep fighting!
Terrible, I can only but imagine what you are going through.
If this Dr had a child who (for instance) fell from his tree house and hit his head, resulting in an acquired brain injury and intellectual impairment, would he then deny his child further medical treatment for any other sickness or injury because of the impairment, of course not, he would consider his child has the same right to medical treatment as he did prior to the accident – the same way your child has the right to any medical treatment she needs regardless of her impairment.
I am a disability support worker, I have done my job for 12 years, and have had many many clients who are on all sorts of medications, we manage quite nicely thank you in insuring that they take their medications on time and correctly..regardless of if the parents are alive or dead, his argument about medication is completely erroneous.
Best of luck to you all.
First of all I’m sorry you have wasted the time with this sorry human being.We also have a special needs grandchild and if anyone had EVER spoken about her that way there would be NO Way I wouldn’t have been over the table!!!! You”re family is in our prayers.
IT IS APPALLING THAT I HAVE TO GO THROUGH ALL OF THIS TO MAK E A COMMENT.
THEY ASKED ME IF I WOULD LIKE TO TAKE MY DAUGHTER ISABELLA HOME 15 YEARS AGO. I DID NOT UNDERSTAND THE QUESTION.
THEY TOLD ME SHE WOULD NOT WALK, OR TALK, OR LIVE PAST 2 YEARS OLD . SCREW THEM!!!!!! I SAID, I AM TAKING MY BABY HOME. MY BELLA IS !% , CELEBRATING her 16th birthday on March 24. I am going to celebrate her!!!!! she is truly my inspiration!!!! GOD has a plan. so all of u go F$%%% urself. OUR CHILDREN MATTER!!!!!!!!
Get a lawyer and Go to the media! Can’t beleieve that this is legal! I have a child with Down Syndrome and this is shocking……Disgraceful. And sounds s bit discrimiatory.
What happened to humanity..truly appalled definitely an issue that needs exposing fixed so none goes through a day like you had again. Perhaps ‘amelias law’ needs to be passed…. our prayers are being said for you and your daughter that this issue is resolved quickly sending love
Absolutely shocking that in this day and age anyone, let alone a so called professional can have this attitude. Who are we to decide what quality of life is, just because a child does not have the quality of life that is perceived to be normal does not mean they don’t have quality of life. I will keep you in my prayers and wish you every success in finding a surgeon who is in the year 2012 and not stuck in the dark ages.
This makes me absolutely sick. These people are an absolute disgrace to the medical profession and show an utter disrespect for human life. Your child is loved by God and I will pray that she will receive the transplant she needs. Ultimately, God will judge these people for their actions and heartless attitudes. Be strong.
You are certainly making the rounds on facebook! I’ve now read some of your previous blogs and am so amazed at your sweet family. Amelia is so blessed.
After I re-shared your story via facebook, a friend of mine commented and hit it on the nail with “this is a move that would make Hitler proud.” So sad and so true.
I’ve worked with people with disabilities of all ages and all abilities, majoring in special education in college, and the one thing that I feel was pounded into us was that every child can learn. Every person can become better than the day before. Who’s to say a child with mental retardation can’t live just as full a life as someone without? I know I’m preaching to the choir here, but just know there are so many on your side. I hope and pray for the best outcome for little Amelia. She is darling and is truly blessed to have you as a mother who will fight for her.
Flood the following with actual hand written or printed letters…emails can go unnoticed and easily deleted with a small flick of a key stroke, but a real letter takes up far more room to be dismissed or ignored.
20/20
147 Columbus Avenue
New York, NY 10023
Primetime/What Would You Do?
147 Columbus Avenue
New York, NY 10023
Nightline/This Week
1717 DeSales Street NW
Washington, DC 20036
ABC World News with Diane Sawyer
47 West 66th Street, 2nd Floor
New York, NY 10023
Good Morning America
147 Columbus Avenue
New York, NY 10023
I was linked to your journal from a facebook group I’m in for parents of special needs kids. My son has the same label as your daughter and it scares me to death that this will happen to him if he needs a transplant, I hope and pray that you are able to get her the transplant she needs.
You don’t know me, but I can tell you I was brought to tears by your story. I’m so appalled, frustrated, and ANGRY about what has happened to you. I only pray that these so called “doctors” who are playing God get off their high horses and realize that EVERY life has value and meaning. Your family is in my prayers, and if there is anything I can do – please email me!
He is saying that because she is mentally retarded that she cannot have the transplant? My is he even practicing medicine? She is a beautiful little girl! My suggestion is to find another doctor and one that will do the transplant. So what if she is mentally retarded? That doctor should know that you as parents will always make sure that she takes the medication to ensure that the organ is not rejected and before you leave the earth forever you can always make arrangements for her care.
That is disgusting. My ‘mentally retarded’ daughter will hopefully be getting a kidney from her dad this April (we find out for sure next week if he can donate).
While we have had the ‘we need to discuss what is best for Ashlea’ discussion, no one has ever said outright that she cannot be transplanted because of her other disabilities.
I am so sorry to hear you have been treated so appallingly by your doctor – I hope you are able to find a hospital that will give your daughter the surgery she needs.
I am so sorry that you have to experience this. Your daughter deserves to be treated just as every other person deserves it!! I’m appalled by the attitude of the people who swore to save life – not destroy it!!! My prayer is that people will unite together to change how people view life (in general) and especially for the most vulnerable – our children! The world is so sick (playing God because it doesn’t fit into their picture of perfection)!! May God have mercy on us!!
This honestly made me cry. My little sister is 11 months old and has a mental disability and I know one day I am going to be faced with a decision like this but to be denied the one thing that will save her life is ridiculous. Every person in this world deserves an equal chance at life, and are equals in every way disability or not. I am a 15 year old girl and I know this, so why doesn’t a doctor who is supposed to know this? You will be forever in my mind and I hope that you do find a way to save this beautiful little girl <3 xxx
Time tells all stories, not doctors, they are just taking a guess as with any other profession in life. if we accepted everything that was handed to us, then life would be not ours. thank goodness we have choices and it is for each one of us to make that choice to fight back and stop accepting other people’s choices. They are not always right. You just have to get to the point in realizing that the choice is almost always yours. Keep moving forward and find individuals who will truly be passionate and concerned for your concerns. These people are out there somewhere, the hell with the bad apples in the barrel. Throw them out. God Bless you and your little one. We as parents are here to protect and find opportunities for the best chance possible for them despite life’s challenges. Never stop…..believing…
Your beautiful princess deserves to be here just as much as mine does. I truly hope someone finds it in their heart, to let your daughter live and to let her know how great this world can really be. To show her that there is still compassion in our society. Being MR does not mean she is worth less than anyone else, right? Is that what they are saying?
My mother is 73 & on dialysis nearly 5 yrs now. She opted not 2 have a transplant when she still qualified so some1 like Amelia would have a better shot @ 1. As we hope & pray Obamacare is overturned so my mother’s care won’t b cut off due 2 the expense, we also pray for all those like Amelia & her family who will surely have their lives cut short because (the non-death-panels) will decide that care is too expensive for someone who will never be a “contributing member of society”. We were all fooled into thinking such practices went away when Hitler lost the war. How wrong we were. We can stop this before its too late. But to do so might not make you popular and trendy. Its all in your vote this Nov. Let everyone know that Obamacare and any such nonsense will not be tollerated.
have You tried contacting local and international disabled people’s rights communities http://www.google.com/search?q=international+disabled+rights&rls=com.microsoft:fi&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1 here links or search in http://www.google.com words: international disabled rights. im wery sure many adult people who have same illness as Your kid live happy life You could ask ALL the disabled rights communities in world to campaign so Your kid gets the treatment+find out of disabled peoples services in the area You have to kids and adults and make plan how Your kid can pay them until she’s 125 years old+write that to paper also go to http://www.google.com and search international+Your country big news tv channels+tv news+newspapers name and words: contact us. and ask them to write+make tv news about the situation. dont believe when doctor says disabled people cant live happy life as adults im disabled and i live happy life and disabled people have lots of services that makes it possible to live normal life at home and work and get married everything
Please try university of Minn. Medical center(Fairview)
I’ve read through all the previous comments and didn’t see anyone speak of St. Christopher’s Hospital for Children, in N. Philly, when they have a successful established Kidney Transplant unit. This hospital may not be as large as CHOP or A.I Dupont but the physician’s, clinical staff, Administration and right down to housekeeping are extremely compasionate and do such great things for our children. I don’t know if there are any “medical” laws out there regarding kidney transplants for the Mentally challanged or not but as a parent myself I most cetainately would not give up and keep looking for the Childrens Hospital that is willing to do this for your daughter. my prayers are with you and your family that this will in deed happen for Amelia. God Bless
This should never happen. Mentally retarded(yes, it is the SCIENTIFIC term) or not, she is a human being. She has value. She should have that transplant.
My nephew was also denied a transplant at CHoP. He was in liver failure. đź™
My heart breaks for you, yet I refuse to give up hope for your sweet little girl! Remind these doctors of their oath to “first do no harm”. Find an advocate, someone willing to fight tooth and nail for you. Find other hospitals. Find someone that refuses to let a child go just because they are “different”. Amelia is beautiful. EVERYONE has the right to fight for their lives. Hugs and prayers for all of you.
I’m the sister to a mentally disabled brother. I’ve seen and experienced some of the prejudice, lack of faith and knowledge the medical community has when dealing with those who are mentally disabled. The doctors said my brother would never walk, because they didn’t know any better. He’s not only walking, but does track and field, horse back riding, and so much more. Please, please, don’t give up hope. There are good doctors out there, they’re just hard to find. I wish I could do more, offer someone to go see, but that’s my mom’s area of expertise. I’ll be praying for you and your daughter. It’s horrible what you have to go through, and no words can express the outrage, sadness, and disbelief I felt upon reading what happened to you. Fight for your daughter. Fight with everything you’ve got, and give them hell.
What can we do to help…..Just know that you are all in our prayers
i just cant speak!!! i think hitler would get along well with these doctors!!! if they are worried about brain damage isnt it more risky to damage a “healthy brain” than one a “already damaged?” if you believe them about her quality of life, whats the harm in possible making it worse???
These people do not deserve to be medical proffessionals. I am sooo upset that anyone could be that cold. A social worker saying those words is a disgrace. I would go anywhere else but there. There IS someone who will do it. I cannot believe that these people are at a CHILDREN’s hospital. I would contact St. Judes. Anything. I will be praying for your sweet Amelia!
This is nothing more than fear on the doctor’s part. Fear of liability. Fear of malpractice. Fear of litigation. Fear of rising malpractice insurance premiums. Cowards. Ethics, indeed.
You know what they say about Brick Walls right? They are there so you can prove just how badly you really want something.
I have faith that something will happen so that Amelia can get her transplant. You seem like a strong and determined mom, and those types of mom’s are always the best ones. Don’t stop fighting. Prayers are coming your way!
This has left me speechless……. It should always be up to the family to decide on what to do. Truely apalled… Amelia is so young and adorable. She shouldn’t be turned away from any kind of a mental proceedure. No matter what. Everyone is different. And everyone thinks at a different pace. What if it was his own child who was being turned away from a transplant because of some judgement written down on paper???
Amelia could have a great future ahead of her. Know one knows what she could be capable of. I know someone who, when she was an infant, the doctors confirmed her as brain damaged and mentally retarded. but you know what??? her parents stood by her. Just as you stand by Amelia.
Today, this girl is TWENTY FOUR years old, She went through high school in classes that were general, CP and Honors. AND she graduated from COLLEGE and now attends a GRADUATE SCHOOL.
Anything could be possible for Amelia. Keep on fighting for your daughter and as you can see, all of us reading your story are standing right behind you.
I sincerely hope that you can find someone to perform the transplant for Amelia. Good Luck <3<3<3<3
Take her to St. Judes.
So, following that logic, should a child with special needs not be given the heimlich manuever if he is choking? Â Where do doctors like this get off deciding which patients are “worth” every effort to save or improve their patients lives? Isn’t that the very crux of the hippocratic oath? Â I’m incensed at the thought that a doctor, the board of a hospital, etc. would presume to decide if someones child is worthy of saving based soley on the child’s ability to perform to some imaginary standard or ‘quality’. These children are special, precious jewels to the people who love them and have just as much to offer to and teach the world as any ‘typical’ child. Shame on a medical establishment in which this kind of travesty is allowed to exist.Â
My heart goes out to you and your family. I am outraged and sickened with the decision that this doctor and social worker made. I agree with every post on this page. 1st WHAT CAN WE DO TO HELP YOU??? Please, contact the advocates that were listed here. Do not fight CHOP, you are wasting precious time and that dr. is inhuman. Go to St. Judes, or Dupont (which I hear both are absolutely AMAZING!), get a lawyer, whatever you have to do. GO TO THE MEDIA!!! They have been some of the best advocates for helping people, I have personally seen their support and how change can come about. CHOP will NOT want their name blasted all over the news bc of this doctor and S.W. playing God! But please, let us know what we can do, we support you!!! I can see by the postings on this page you have alot of people willing in your corner. God Bless, and my daughter and I will be praying for you everyday and I will pass this on to others. You have alot of support out there, this was forwarded to me by SEVERAL people out on fb and I will be forwarded it through fb, email and our church’s “fb” type site. Praying for you…..
I am so sorry! I will be praying for you and your family – for wisdom, money, peace, everything you need to fight this battle. But I am also praying for that doctor and that social worker that GOD would intervene in their lives and cause something to change their perspective!
I was appalled by the treatment you were given! This is unacceptable, especially in this day and age. I have forwarded the link to 60 minutes. I think that it is appalling that Larry Hagman can get a new liver when he destroyed his due to drinking but your daughter cannot receive a new kidney just because she’s “mentally retarded”??? I’ll say a prayer for you and your family. Best of luck. ((hugs))
wtf?!?!? to think that the government have given transplants to convicts sitting in jail for life!!!
Utterly shocking. This resonates with me as our daughter has Down’s Syndrome. She has had heart surgery but I understand that people with Down’s Syndrome are never considered for transplants either.
I cannot believe that people in the medical field are so cruel!! It doesn’t matter if she’s mentally disabled, she’s still a HUMAN BEING!!! Keep fighting and pray to Heavenly Father for guidance. Amelia is a beautiful daughter of God and he will protect her how He sees fit.
Please sign Amelia’s petition here:
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive
We are rapidly nearing 5,000 signatures but we need so many more!
How can I reach you to find out more information about this story?
They told me to pull life support on my newborn baby that had already experienced 4 grade 4 intra-ventricular brain hemorrhages had been clinically dead for 45 min, with no life support.
I refused – she graduated High school and is now an advocate for the handicapped and mentally challenged individuals……….those doctors have probability on their side but they never allow for possibility and the love and hard work of parents.
Do not give up and take it to the Media if you have to let the whole country know…
Keep up fighting for your daughters life!!!! It is not the doctors decision if your daughter lives or dies!!! SHE IS HUMAN THAT SWEET GIRL HAS EVERY RIGHT TO LIVE!!!! Oh and seriously they warned him about how involved your family is? wow. Idiots, its her family and they LOVE HER how could they not get involved in every inch of her well being?! I am glad you will not stop fighting for her!! NEVER GIVE UP!!!!
Outraged is a great way to describe the feeling after reading this. This family and child’s Patient Rights have been denied! If you read the Patient’s Rights list on CHOP website just a brief glance and the 2nd and the 9th right have been completely broken! Unbelievable! To the mother who wrote this story….thank you for the courage to share this story and I wish you strength and courage to continue the fight for Amelia’s rights. I believe this would be a situation where your local office for Disability Rights could help guide you to a solution. It is unfortunate that the team of healthcare professionals have not had a child or adult with an intellectual disability in their life to know the quality of life that they have and that they share with everyone around them. Blessings to Amelia and your family.
I see you live on the East Coast. If you have the resources and ability, please bring her here to Peoria IL to the OSF Children’s Hospital. We are part of St.Judes, and The Children’s Miracle Network. Our doctors are caring and the nuns who run the hospital would never turn a child away no matter what their “quality of life” may be. I know they don’t show your email on here but I am on FB, Debi Reed, and my email is on yahoo under debivc78. Please feel free to contact me. I would love to see you tell those Doctors in Philadelphia to shove it!! Amelia deserves to the best.
This so called DOCTOR AND SO CALLED SOCIAL WORKER SHOULD BE REPORTED.THEY HAVE NO RIGHT TO TALK THAT WAY TO YOU AND YOUR HUSBAND THAT WAY.THIS MADE ME SICK.YOU SHOULD GO TO ST.JUDES.I AM SO SORRY YOU HAD TO EVEN HAD TO HEAR WHAT THEY SAID.MY GRANDSON WAS VERY SICK WITH MDS.IT IS A FORM OF CANCER.AT ONE POINT THEY GAVE HIM A TRANSPLANT AND HE ALMOST DIED FROM BEING ALLERGIC TO THE CORD BLOOD.I PRAISE HIS DRS.THEY WORKED WITH THE FAMILY.THERE WAS ONLY ONE THING TO DO THEY USED MY DAUGHTERS CELLS.THEY NEVER DID IT BEFORE BUT THEY DID IT AND SAVED MY GRANDSONS LIFE.I AM TRYING TO TELL YOU WHER THERE IS A WILL THERE IS A WAY.YOUR DAUGHTER DESERVES THE BEST.SHE IS A HUMAN.PLEASE SEARCH .HE WAS IN VANDERBILTS HOSP IN NASHVILLE.CALL THEM AND PRESENT YOUR STORY.I WILL PRAY FOR AMELIA AND THE FAMILY.SHE DESERVES A CHANCE.PLEASE KEEP US POSTED.GOD BLESS YOUR FAMILY.
I can’t even begin to imagine your anger and frustration. As a mother, I have no doubt that I would give the beating heart from my own body to one of my children if they needed it. Every child matters, every child counts, and NO ONE truly knows the limits of a child. Keep fighting for your daughter and know that a lot of people out there stand behind you.
I am insulted that the words”Mentally Retarded” were even used!! I am severely disabled, my IQ was originally said to be 60. They were only off by approx. 100 points. She is beautiful child who has the gift of love, caring, learning and endless abilities! You are the professionals for your child, not people who do not know and understand her. For they to assume she is not good enough to live is insulting and cruel. You are in my prayers and sending good vibes, let me know if I can help! Marcella Ryan, Executive Director Wayward Wheels, Inc.
I stayed up late last night after reading this posting and emailing people who I thought might be helpful to you. So far I have written Wesley J Smith, senior fellow of the Discovery Institute, Michelle Malkin, Priests for Life, Arc, and the Terri Schiavo Foundation.
Wesley Smith wrote back and had these words to offer you:
I am so sorry you are experiencing such cruelty.
Rectifying this will have to be done very carefully and right, if it is to be done at all. It will require original reporting and investigation. I am not in the position to do that. I suggest you try to alert media interest. But first, contact disability rights groups, including NOT DEAD YET. Also, if interested in litigation or legal rights, contact the Alliance Defense Fund in Phoenix. The Terri Schindler Schiavo Foundation could also be of potential assistance. Keep me apprised.
WJS
wjs@wesleyjsmith.com
I hope you see this comment. Your words leapt off the screen and into my heart. I have never done anything like this before. I want to help.
Sincerely,
Svetlana Lauren
You really need to talk to someone from the media……tv, newspaper, etc. This is an absolute crime! It sickens me as the mom of an 18 yr old with Dev. Delays and a 16 yr old with Asperger’s/Autism……I cannot even begin to imagine how mad you must be. Please stay strong and believe that some how, some way you will get Amelia what she needs to survive and live the wonderful life she deserves!
This has me in tears :’o( I have a 5 y/o with severe autism together with severe developmental delay. I have nothing but complete respect for you. I have no idea what I would do in your position (Im in the UK, though I dont actually know how the situation would differ (if at all) if Im completely honest.) However, if I got nowhere Id seriously consider going abroad to save my daughters life. Im thinking somewhere in India where I doubt the Drs are so quick to judge. How dare they tell you your child isnt worth it!!! Much Love and luck to you and your little girl <3 <3 <3 <3 <3
I have no doubt that this will be the quickest overturned decision in history. With all the medical lawsuits and all the unnecessary surgeries that are sometimes recommended for children with disabilities, this one that is so vital has to be provided.Based on the hippocratic oath, it cannot be denied. And how can a children’s hospital that is dedicated to fight for the right to live for children, even let these words pass their mouths. When parents refuse to take their children to a hospital that will not fight for their quality of life, they will financially feel what a poor and heartless recommendation was expressed.
If you are near Philadelphia, please take her to The Family Hope Center http://www.familyhopecenter.org . You will never regret going there.
I am so appalled at how you were treated and how they devalue human life based on their “opinion”. I almost can’t wrap my head around how wrong this is. My sincere wishes for healing.
As a nurse and mother of children with a genetic disorder and mental retardation this sickens me, frightens me and shames my profession. Who determines quality of life? Who gets to choose what qualities are worthwhile? I take care of HIV patients they are on that list, some have wonderful happy healthy lives, others do not seem to fare as well but who is to say? Who is to say that those whose lives are tormented by disease don’t have moments of pure perfection and enjoyment. I know my children do. What else is on that list? I have MS, if I get into a car accident and need a kidney will it be denied because my quality of life is lessened by MS? Who will tell my children, “We’re sorry, but we just didn’t think your mom would enjoy living with the new kidney…because she has a limp. We thought it should go to a marathon runner” 5yrs he/she later dies of an aneurysm that was never discovered…who gets that kidney now??? I pray for your daughter that this prejudice ends. She is absolutely beautiful and no one with a smile that bright should have their quality of life questioned!
Speaking as a transplant social worker, this does not make any sense. We have transplanted a number of developmentally delayed patients at our center, as well as have a number of developmentally delayed patients on the national transplant kidney list. Please contact me if you need more information; my name of FB is Sarah Florin.
Wow…I have not even been blessed with any children yet and I’m sad, mad and want to know who to call and what I can do…I am so sorry…but DONT GIVE UP….I know by what I read you won’t, but fight…their are far to many doctors and Children’s Hospitals out there…Prayin for your family and your little angels health…
Did anyone think that perhaps the doctors are right? Anti-rejection medications are toxic to the body and can cause severe side-effects. There was a case almost 20 years ago about a boy named Benny Agrelo. He was born with liver problems and had two transplants. The drugs caused him such pain that he could barely eat, couldn’t play with his friends, and spent most of his day bedridden. He and his family went to court to ensure he could die with dignity and an enjoyable life, even if it ended sooner. Since we only know one side of the story, it would not behoove us to make judgements on the doctors.
I work with Not Dead Yet, the disability rights group Wesley Smith mentioned. I’ve written about your situation on our blog. The entry is at this address:
http://notdeadyetnewscommentary.blogspot.com/2012/01/philadelphia-young-girl-being-denied.html
If you can give me contact info – or want to contact me – we have quite a few disability activist allies in the Philadelphia area who could probably help you provide some public pressure to the hospital. Let me know if you need anything in terms of support in getting the hospital to turn around.
My own email address is sndrake at aol.com (altered to keep spammers from sweeping it up)
That is sick and heartless!
I am SO glad that I read that only ONE idiot is blaming this on Obamacare. Someone, who has NOT read any of the bill and doesn’t understand the way insurance is run now, compared to how it will be run in the future. This person only follows her talking heads on her favorite conservative radio and TV stations. This is the DOCTOR and the HOSPITAL’s decision and it has nothing to do with anything else – NOTHING.
I hope and pray and SUGGEST that you find another hospital and Doctor that sees that no one can tell what the future will bring. Not even them! Find second and third and forth opnions. you have the right to do so. There are plenty of people here, that have commented on such. Check into The Children’s Miracle Network, St. Jude’s, etc. Don’t let someone’s fear dictate yor decisions. This is YOUR life, You family and YOUR child. Keep searching until the serach is over. Love to you, Amelia, and the family.
I am appalled that this happens unbelievable, disgusting etc.
My heart breaks for you as I read this. No one should be denied a procedure that could save their life, no one. Who are those doctors to play God? I know you have your reasons for wanting to do things at CHOP, but there is nothing on this planet that would make me want my child treated there thanks to doctors like Paul Offit. If they refuse to do it, there are other hospitals that would save your beautiful little girl’s life. I am so sorry for the hell you are being put through.
I’m sure that if his child was mentally retarded and needed the same procedure that she would be first on the list. Sad, disgusting, a doctor with no reverence for life. Luckily (I hope) there is someone else you can turn to. I’m sure you will find what you need, you sound like a fighter.
As the parent of a child with Development Disabilities I am overwhelmingly appalled! To have anyone tell me that my daughter doesn’t qualify because of how she happened to be born. . . . HOW DARE THEY!!!!!
We have to stop this from ever happening from anyone!! Maybe they should stop giving transplants to prisoners on death row . . .
It’s ethical to give a transplant to someone that is scheduled to die for some heinous crime, but not to a helpless child that had no choice in how they were born???
What is this Country coming to??
If you want any help taking this to the media, I am a local publicist and I will help you pro bono. This is appalling and I am sure that I can get the media to bring these doctors to their knees and give some answers! I am so so sorry you have to go through this. But I feel confident that if this story gets into the media you could be looking at BETTER options than you ever imagined. 🙂
As a parent of 2 disabled (Mentally Retarded) children, I am so saddened by this. I take my children to CHOP and I can’t believe that this doctor was so callous and cold and talk of your child as if she was not worth so much as a second look. Who the hell gave them the authority to make decisions with others lives. Your daughter is your daughter regardless of her ability to not do what others can. You will fight the fight and I will sign the petition to make CHOP perform this needed surgery for your baby. I pray that things go in your favor and you will be blessed and Amelia will get her second chance at life.
Have you read the international news stories about Baby Joseph last year? If not, I suggest you do and contact the organization Priests for Life to see if they can assist you in some way. It is absolutely ridiculous that this is happening in the United States where we are supposedly created equal and have the right to life, liberty, and the pursuit of happiness. How is this legal? How is this not prejudice? I think if I were in your shoes, not only would I be contacting a lawyer and Priests for Life, but also a number of human rights organization, local and national newspapers, television stations,advocacy organizations and councils (there are quite a few for children, people with disabilities, people waiting for transplants, etc.), and every place I could think of that might offer assistance and spread the story. Even the UN has a council for human rights. And how about the ACLU? If this is common practice, something needs to be done to change it and make people aware because it is flat out WRONG. This is an innocent child’s life they are denying, and whether the transplant allows her another 12 years or another 80 years is not the issue. The issue is that the doctor has decided she is not as deserving as other children, not based on anything but that her records say she has a disability. (And, good grief! He was warned about you and how involved you are with Amelia? Versus what? I would think most children that they see for transplants have parents with them. And I would HOPE that those parents are the ultimate example of “involved” with those children. What kind of doctor would not recommend parents being very involved in the lives of their children, especially if they are young children dependent on their parents, and especially if they are facing life-threatening health challenges? His license ought to be suspended just for that comment and the ideas behind it, not to mention the thought process behind his recommendation and the decision itself.
This is horrible! I encourage all to read “Death Panels” by Michelle Buckman – a book of fiction about what the future could bring. According to this story, the future is here. I will pray for the child AND the doctor (sounds like he needs a lot of prayers too.)
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive#
Plus write to them:
© 1996-2011 The Children’s Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia, Pa. 19104
Main Number: 215-590-1000
Physician Referral Service: 1-800-879-2467
Coordinates: 39.9486937, -75.1929596
Please don’t put in any swearing as it will make your letter look very unprofessional, but it is worth 44 cents to send a complaint letter to the hospital. No one should have the right to choose who lives or dies!
awful…. just awful… they have no right, so what if shes mentaly retarted?! its basicly man slaughter…. they know whats going to happen if she dosen’t have the transplant… i am so so so sorry, i can’t imagine what your going through…
I am an Autistic person and a disability advocate. To know that my life, as a person with a developmental disability, would be considered less valuable than that of a person without any disability, is sickening and abhorrent. This doctor and hospital’s actions are morally appalling.
I wrote a response to your article earlier today at “Life Not Worth Living“.
Blessings and peace,
Lydia
lydia.brown@autismeducationproject.org
Your story broke my heart. 13 years ago, my sister-in-law got a virus in her heart that caused her heart to enlarge. After many months in and out of the hospital our family was told that anyone else with her condition would have been given a heart transplant, but Debbie was not eligible for one because she was mentally retarded. She lost her life because the mentally retarded/developmentally delayed are not seen as people worthy of life. Now we have our own little one with developmental delays/MR (she has Kabuki Syndrome) and I do worry about what her future will be like in a society that doesn’t value ALL life.
Your article came up on my facebook and I could not take my eyes away from reading your story. I am a soon to be mother of my first child and your story touched me in ways that I cannot explain. My husband’s mother was the conception of Blue Blood…which is family of close blood lines having a child together. With this being said, we have been told that our child has a huge chance of having MR and other severe medical complications. I believe that GOD does not make “junk”!!!! And as a parent you should do whatever you have to for your child. It is no one’s place to decide what child should live or die. I’m very sorry about your daughter and will pray everyday for her!! I wish you the best of luck!!!!
Go to CHANGE.ORG and start a petition! People like this hate it when you reveal their evils! And the hospital won’t like the publicity. Hit em where they live! You’ll get your operation. Praying for you and yours….
I am appalled. This attitude is like something from the dark ages. I grew up with two cousins who had muscular dystrophy. Their parents were told to institutionalize them so they wouldn’t grow “too close” to them. I am proud to say that my uncle and aunt did not take that advice and they had a very happy life of 21 years. Who is this doctor to judge the worthiness of a life? Every life is worth living! I will pray for success in breaking down these prejudicial barriers. Be strong!
This is so sad, but these are probably the same doctors that abort the babies before they’re even born. I wouldn’t be surprised, if he also aborts babies. Lord have mercy on us and on your family.
Heil Hitler! That is the first thing that popped into my mind when I read this! I don’t think the Hypocratic oath means anything to some so called ‘doctors’ these days.
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
God be with you and your family. May He guide you to the place He knows you need to be.
God Bless you and your family – your daughter’s life is precious – don’t be intimidated and don’t give up. Praying for you and your family.
The following is a exert form an article I found online. The writer is so correct, This is illeagle (but it seems to be common practice). Hire a Lawyer like yesterday!!!!! and then get on the Today show. This is horrific and it must stop!!!!!!
•Use the law. Discrimination is illegal.
(this is the advise) ( the following is an example of a situation like yours)
Both the physician and myself are extremely upset about his not being a candidate for the transplant and plan on appealing the decision… and if need be, press discrimination charges against the hospital.
At that point, we contacted the National Downs Syndrome Congress who gave us the contact in the US Justice Dept. The lawyers there were highly interested in this case and flatly stated they would come to Denver to pursue this if necessary. However, their letter to University Hospital did the trick in changing the attitude of the doctors. The letter asked what the hospital procedures were to qualify someone for transplant without reveling our son’s name. They didn’t have to. Their letter head spoke volumes and we were then told by a member of the transplantation team that they could not discriminate.
My friend actually posted this on her facebook wall and I read it. I am an expecting first-time mother of a daughter and I can’t even imagine what this experience has truly been like for you and your husband. You seem to be the kind of parents who will take this as far as you can and beyond. Which is exactly what Amelia needs–a strong voice and tireless advocate.
You are in my thoughts and prayers.
It’s ridiculous that they wouldn’t allow her to be put on the list because of her mental “delays” as that misguided doctor put it but I find it even MORE ridiculous that even with a family donor they refuse to do the procedure. It’s not costing the transplant team or hospital anything! They will still get their $$ from the insurance company regardless. It comes across like they are trying to play God and they don’t have the right to do that.
Did they forget the oath they took–especially the part of “…will do no harm…”
They are doing nothing but harm to your family and your precious girl because of some misguided “principle”or belief they have. Please keep us updated!
Why is everyone failing to realize that only one side of this story is being presented? Doctors sometimes make bad decisions which can be reviewed. The ethical questions are not as simple as many would like to believe. We simply are not being presented with all the facts here.
I am so appalled by this happening to you. I have facebooked, tweeted and blogged about it, trying to bring awareness to Amelia, your plight, and the petition. My thoughts are with you.
I would try getting your local Catholic parish involved. Doesn’t matter if your Catholic or not. Talk to the Priest. You should find a large, unified group of people who believe in the sanctity of life who also find appalling the idea of judging one person’s life as more worthy of saving than another. With any luck you will also find some people with some influence and sway amongst the medical professionals.
Appalling. Go outside our lousy country if you must to get her transplant.
Chrissy,
Bobby Schindler of the Terri Schaivo Foundation wrote me back after I sent your post, “Brick Walls.”
He would like you to contact him tomorrow. I really hope you see this. I would be more than happy to forward you the email.
Sincerely,
Svetlana Lauren
Absolutely disgusting.
I found some information on transplants (kidney) for those with mental retardation. Don’t know if you might want to contact these doctors and get them to help back your argument http://researchnews.osu.edu/archive/orgtrans.htm
http://www.mnddc.org/news/newsitems/transplant.html
http://nisonger.osu.edu/papers/LWSarticle.pdf
If the only basis they have is her mental health then you might want to contact the ACLU or a lawyer and talk with CHOP administrates about the discrimination case you could bring.I also would encourage anyone in the Philly area to contact their congressman and representative on this matter.
<3 Mighty, Mighty, Mito Mom
I have cerebral palsy with limited cognitive effects, I found this article through a disability advocacy group. I had never heard of this particular syndrome before, so I did some research. I can’t find anything mentioning transplants as being necessary for WH. Obviously it’s still a bad situation, but does anyone know if this transplant was related to the disease or caused by something else? Anyway, my dad is a doctor, and he will tell people that the decision-making process in health care is completely messed up beyond repair. Maybe that doesn’t help, but just know that the people on the other side see it as well.
A bit confused after reading the story. Are HIV & Hep C conditions that Amelia suffers from, in addition to brain damage & mental retardation? Just wondering.
Now for my comment. I am astonished that this could be a real story! My son was born with hypoxic eschemic encephalopathy, ultimately ending in a diagnosis of Cerebral Palsy. The Dr.’s at the Children’s Hospital in my state fought to save his life at birth, and he is a joy to our lives. If he were ever in need of a life saving transplant and denied that due to his brain damage, I would go insane! I am certain this little girl is a joy to the lives of those who know her. She was saved at birth, and deserves the best option at survival now. This cannot be legal, and certainly is not ethical or logical!
i am so deeply sorry you had to endure that. i couldnt even imagine if it was me and my daughter in that situation. i cried for your family and i will pray for you. i also shared this on my fb and so far have had good feedback and all my mommmy friends are gonna go sign the petition as well. keep us updated and good luck.
People were warned bat my husband and me because we fought for our son’s rights. He is deaf and perfectly fine. When we were quiet, we were told to speak up. People who think they are “normal” like to play God over others. What was this foreign doctor doing at CHOP? Making determinations on our children? Many other countries don’t even care for their challenged child? Why do we pay for very sick and challenged foreign children at CHOP and are then told that we can’t take care of our own. If there are parents to take care of their children from anywhere, here or abroad, CHOP should do their job! take care of the children and stop playing God!
Chrissy, I feel as though I could have written this. My husband and I encountered this same enfuriating treatmet during my son, Zane’s lifetime. He had WHS and ESRD as well. The good news is that there are other places that you can turn to. Tampa general (in Florida) was going to perform Zane’s transplant. You can also contact the Natl Kidney Foundation. They can easily point you in a good direction. Our nephrology team did have concerns in the begining that this issue would arise (that he may not be “granted” a transplant since he was profoundly delayed) but I’ll never forget when they cheerily informed us that yes, he would be elligible for the transplant because he is “an integral part of our family.” Odd response, right? I thought, compared to what? Are there parents that want transplants for their delayed children who DONT consider them and integral part of their family?!?! Do they keep them in a kennel on their back porch!?!?!
And the, “I’ve been warned about you…” We heard that too! God forbid you be an educated advocate for your child and not question a medical “professional”. We did our utmost best to advocate for our child but in the end were still railroaded into decisions that ultimately caused us to lose our boy. My son is gone now. He is an angel whole and perfect; for that I am grateful but my arms ache to hold his little body. His life was not valued by these doctors. He was routinely marginalized. We will continue to fight for his rights and any other incapacitated patient’s rights by speaking out, creating awareness and telling parents and caregivers everywhere to SPEAK UP and BE HEARD, QUESTION DECISIONS, DO YOUR OWN REASEARCH. May God bless your family Chrissy, with strength and courage to continue to demand the rightful care that your precious little Amelia deserves. Sincerely, Martha Stoetzer, mom to Zane 2001-2011
Since when is it within the scope of ANY healthcare professional, or ANY healthcare facility, to determine the value/purpose of another’s life? Aren’t healthcare professionals and healthcare facilities only supposed to access one’s medical needs and offer the appropriate medical care for those needs…when able to do so?
Plain and simple – NO ONE is privy to such complex knowledge as “the true value and purpose” of one’s life, regardless of that person’s age, disability, lifespan, etc. One’s purpose is simply TOO COMPLEX for ANY human being and/or group of human beings to know/define its value.
I am not sure why your child is not being given the opportunity for the transplant based on “when” she was put on the waiting list and “how immediate” her need is. Especially since no one can predict what your child’s purpose/importance is in this life, no more than they can do so for the person that may wind up receiving the transplant they are trying to deny to your daughter. I just don’t understand how ANYONE can see her value/purpose as any less than the “otherwise typical” person?
Best of luck to you and your family!!!!
I am speechless. I am angry. Who are they and how dare they? What do they even know about her quality of life? How do they even define quality of life? Can they also deny an older person a transplant because of their “Quality of Life” Every life is a gift, and no one gets to decide how one life has more quality than another. This is unacceptable.
This Broke My heart, I can’t imagine I would have held it together as well as you. Your Family is in my prayers, your Daughter is beautiful and deserves every right that is extended to a child that is not Mentally Slow.
Right now, in a school district right outside Philadelphia they are teaching 3rd graders about “an old man”, who had medical problems and was depressed. In the story he also “killed himself”. These children are then asked to think of his quality of life and why he would do so.
How do you control who has the right to live? History has proven you start by “teaching” the children.
HANG ON! This is unacceptable. Firstly there is NO WAY to determine how long a transplant will last. Statistically LIVING DONOR transplants last longer than deceased donor transplants. Secondly it is mere “fear tactics” to proclaim that the drugs they give post transplant are dangerous and may cause brain damage”. I know many people who have had 3 and 4 transplants. I know a woman who has been either on dialysis or transplants for 45 years, finished college, worked as a nurse, had a family et all. Thirdly it is really quite irresponsible and wrong for you as parents to state “if Amelia does not get this transplant she has no future” — right after you state you cannot predict the future? MANY MANY people live happy fulfilled quality lives while on DIALYSIS. Your daughter is in a perfect position to receive dialysis at home with such proactive and involved parents. I know of dozens of people who have survived more than 20 years on dialysis and are doing quite well, many who have finished college and are working full-time. There are people who have gone river rafting, rock climbing and traveled the world while on dialysis. It is doable. Her life is not over if she is denied transplantation and it is disinformation or misinformation to the public in general to state this. There is peritoneal dialysis (done at home) which is a very healthy and easy form of dialysis. There is also short daily home hemo, extended daily home hemo, nocturnal home hemo and conventional home hemo. When you as caregivers need some time off you can always have her do in-center treatments. You can travel with her and continue living your lives. It is not the END! Please take a deep breath and realize that IF no other transplant team will consider her, THERE ARE STILL OPTIONS. There are many transplant teams throughout the U.S. and I certainly wouldn’t give up. Hang in there. Email me if you would like more information. Blessings & Peace.
I agree with the doctors. Your daughter may be precious to you, and I’m sure she is a wonderful person. But the time, energy, and money involved in doing a transplant should be spent on a child Who will actually thrive. Let’s call a spade a spade, this little girl has some serious health issues, and even baring her kidney problems she, she may not survive past a certain age as a direct result of her non mental health issues. It’s a shame, but the fact of the matter is is that she is a very sick little girl.
I am studying to be a paramedic and I find this Dr. absolutely appalling!! I would never treat any pt. any different for any reason!! A second opinion is needed and im sure a Dr. will do this! I would also take it up with the media. How can our children be tossed aside just because of a developmental delay??? Take action please. Thank you for being such loving dedicated parents. Wish all parents were like that.
When I see those pictures of your gorgeous daughter, I see a child fully engaged with life. I’ve known many developmentally “disabled” people, all of whom added infinite value to my life. I resent their assumption that her life means less than anybody’s! For shame!!!
This is America R~I~G~H~T!!!. Lets break this down the way this Doctor did, using 3 children . 1st child is very smart goes to collage becomes a dentist, 2nd child never graduates from High School, gets with the wrong crowd and murders someone and is in jail waiting trial, 3rd child mentally retarded famous Actor Chris Burke who has his own place and is well know in Hollywood, and earns more money then most people will ever see in ten years in one year. Now let say all three need a transplant to survive. Child 1 & 2 are able to get that transplant but Child 3 should die because he is mentally retarded!!! Something is really wrong when a human life is not just that..A humans life!!!! Something is really wrong here with this doctor who tries to play GOD and thinks he has the right to pick which human he decides should live or die!!! I know of two people transplants, one a kidney and he lives for three years afterward and the other was a heart transplant and he lived for 5 years. I myself am an organ donor and I pray that my organs do not fall in the hands of a doctor like this, that doesn’t give a person a longer life regardless of who it is. The only thing I can say to this doctor is, he really needs to remember the Hippocratic Oath he took when he became a Physician. I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help
I shared this on Facebook, and the mother of one of my friends is a unit manager at CHOP. This alarmed her, as it violates precedence that has been set of performing transplants on children with developmental-mental disabilities. She is passing this information along to Important People, and has promised to advocate for this family from within the hospital.
My family will be praying for your family.
Have you thought about the Shriners??
This is appalling, and I’m so sorry this happened to your daughter.
Here’s a petition for it — http://www.thepetitionsite.com/2/Dont-Deny-Transplant-Because-Of-Special-Needs/
I am mortified by this. I have a son with special needs that was in the hospital till he was 6 months old and has had 14 surgeries and well over 25 procedures. I have had doctors tell me what they will and won’t do but I don’t stand for it! I’ve also been called “involved”. They wrote it all over my son’s file. It’s the nice way of saying you care about what they are doing to your child and will fight for what’s right. This disgust me! How dare they pretend to know your child’s quality of life. Doctors do nothing but tell you how every case and child is different and then they try to fit you all in the same box. Telling you that her life is worth nothing because she is mentally retarded. They told me a ton of things about my son and I wouldn’t listen. I can understand how they have a say if it is someone’s liver from an unknown donor but your family will donate and so it is up to the family member giving up the kidney to decided. Although, this is disgusting and appalling it happens a lot and things like this have happened to me and my son. I’ve seen doors slammed in our face and I just look somewhere else. If he doesn’t think she’s worth it then you don’t want them to be doing a life threatening surgery on her anyway. I understand you’re devastated and scared. We were at a hospital that is known for saving children with my son’s condition. They had the highest rate of survival (97% while everyone else only had 50%). But once the doctor found out he had a heart problem to he basically told me he wasn’t worth it. They let him suffer and just sit there in the NICU for 3 1/2 month until I said enough is enough and found another hospital. I was scared and upset but it was the only choice I had. We transferred him and suddenly there were tons of problems with him and he might not live. Come to find out these problems always existed the other hospital just never told me. It was a long road but after 2 1/2 months of me pushing and begging he got the 6 surgeries he needed and we left the hospital. He is five now and doing WONDERFUL. Leaving that hospital was the best thing that ever happened to us. Like I said at first I was devastated but we found someone better. You should check out Wolfson’s Children’s Hospital in Jacksonville Florida. These doctors are amazing and they really do care about what parents say. They have learned that the parent is the key to the child’s survival and always ask me what I think about something they suggest. They include me in rounds and ask my opinion and allow me to have questions. I pray you will find what you need for your beautiful daughter. Although, it doesn’t seem like it now, something better is waiting for you out there.
Susan I agree with you and my first thought was Shriners. They work with “mentally retarded” children. I’m sure they would be VERY helpful! Very serious you need to contact them if you haven’t already they can at least help you find someone to help you if they can’t.
Wow, this is just…mind blowing.
My first thought is this: I can’t imagine how many liver transplants, be the donors living or dead, are given to patients who are experiencing liver failure due to cirrhosis resulting from alcohol abuse. Deserving? Where is the DESERVING in those situations? Those people DESERVE the transplants LESS than someone who needs a transplant of any kind due to circumstances that were NEVER in their control, yet they are not denied. Being born with a condition that causes the need for future surgeries, transplants, or other medical procedures does not make that person any less deserving of the transplant. The quality of life experienced by patients with mental or physical handicaps/illnesses may not be the same standards with which these practitioners have been blessed enough to enjoy, but as the saying goes: “Everybody is a genius. But, if you judge a fish by its ability to climb a tree, it’ll spend its whole life believing that it is stupid.” (- Albert Einstein) The main point in this quote: It’s all about perspective, and clearly, the board who decided Amelia was unworthy of the kidney transplant is suffering from impaired judgment due to horribly skewed perspective. If the only quality of life you consider is the day-to-day grind of the average American, people all over the world would be undeserving of a transplant when held to such standards and expectations. This child deserved to be born, has deserved to live thus far – will she not return to HER standard of living if the operation and transplant are successful? She has most likely never had anything close to the quality of life they experience, but that doesn’t mean there is NO quality of life. This board is basically saying that because Amelia will not thrive in the manner that a child would who did not have the handicaps she does, she does not deserve the chance to keep living. I hope the board can step back and look at it from a more grounded perception. And when they do, I certainly hope that their decision turns their stomachs as much as it has turned mine.
That being said, it says plain and simple in the CHoP Patient’s Bill of Rights that all patients have the right to receive care, treatment, and services regardless of race, color, age, sex, national origin, religion, HANDICAP, DISABILITY, sexual orientation, who pays for care or your ability to pay. The board must have been out swiping candy from helpless little babies that day.
~Heidi Cox, 26
Clarksburg, WV
GO TO THIS SIT AND SIGN THIS PETITION FOR AMELIA CAN GET THE TRANSPLANT SHE NEEDS http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
http://researchnews.osu.edu/archive/orgtrans.htm Not sure if this will help any but maybe you can use this to fight their ruling….
This is VERY disturbing! Those involved with the pro-life causes..like National Prolife could help, as well as joniandfriends.org I can’t imagine how this ust make YOU feel if I am disturbed by this. God created little Amelia and it is His job to say when a life should end,NOT the doctors withholding treatment. I willpost this in Facebook as well. This is terrible.
I grew up thinking doctors were supposed to help people , period!was I wrong. There are still many ,many great doctors that would not hesitate to do the surgery! do not give up because of one loser!!!! would he operate the same for a “normal” person who had no arms or legs? who decides what is worthy and what or WHO is not? good luck,and many prayers. you will find someone! god bless you all.
Try to show him this http://researchnews.osu.edu/archive/orgtrans.htm
I am so sorry you are going through this. It is absolutely appalling and disgraceful, especially since you are willing to find your own donor. My BFF of 30 yrs has a very disabled son and stopped taking him to CHOP. It was a number of years ago (he is 14 now) and I dodn’t remember the exact circumstances, but she would not stand for it and now takes him to St. Christopher’s and Shriner’s. Good luck to you. I pray your story will get out there and your beautiful daughter will get the transplant she needs and deserves just as much as anyone else!
I agree that every parent needs to advocate for their own child. If someone won’t help you then you try, try again. I know that there is a list of diseases or syndromes that a patient can have that would be incompatible with a transplant according to some transplant programs. This is done because there is a limited amount of organs. It is thought that MR patients are more likely to have various other health issues that would cause an organ to be rejected or other unfortunate problems occurring. This list is to insure the patients who has a transplant will be less risky and have a more likely chance of success. Is this fair… Hell no! But would it be fair if your child is waiting for a transplant and dies while a child who has many issues that complicates organ transplant gets an organ and the organ is rejected. (though this doctor says strictly about MR and not other issues associated with the patients disease as a whole does not IMO seem like a valid reason or he didn’t get a chance to point out his reasoning for not accepting the patient in better detail) Not all Dr. believe the MR patients are at a increased rate for organ transplant failure, and studies might be pointing to the increased likelihood that this is true. Now saying this, if the family offers a living donor they should be able to dictate that their child or relative gets it and Dr. should IMO agree to operation.
I am only pointing out that there is a complicated dilemma on who gets organ transplants are not black and white. I feel for you and if my child was in the same predicament I would not lay down without a fight. So I am not saying how you felt and handled situation is wrong just putting some reasoning why there is the MR on the list for patients not good candidates for transplants.
I am so sorry. This is disgusting. It hurts my heart. That man should NOT be a doctor. He and the Social Worker and anyone else involved should be ashamed of themselves. I signed the petition and I’ll be pulling for Amelia and your family. <3
Having a niece with a developmental delay and my family working in disability services the actions of this doctor and hospital astound and disgust me. So they would rather give a transplant to a medically sound child as they think she will be able to remember to take her meds.
I hope that a hospital and medical team somewhere near you will take heart and perform this for your gorgeous little girl. It angers me that they were ‘warned’ about you, like you are not meant to stand up for your childs right and health and well being.
Love and prayers to you all. xx
As a mother with a severe developmental delayed 2 year old son, I too am appalled to read this. I do not know what the requirements are for transplants here in Australia, but I pray they aren’t as disgustingly unfair as they are at the CHOP.
If you child has not got the right to live, God would not have created her. She would never have been born in the first place.
Perhaps God has chosen your daughter to help introduce a change in selection criteria for transplant recipients.
I often wonder about the Hippocratic Oath that doctors need to swear by and how doctors implement this..
Did that guy conveniently forget about the oath when denying your daughter the transplant? Or is it a selective kind of thing. Apply the oath where you see fit?
Absolutely disgusting! I hope this will backfire soon and in time for your daughter to still be able to receive the transplant.
God bless <3
My parents were told that my sister would be lucky to live to 20, My dad told the story at her 40th birthday a few years ago.
She is very independent and loved by everyone in town despite having half of her brain die when she was six and losing the use of the right side of her body.
My dad fought hard for her and she has had some very big brain operations to improve her quality of life, right through to stomach stapling when she decided she wanted it… but it was very hard work when she was little.
Keep fighting!
This story came up on my news feed. After reading it I am sickened. How dare they tell you that your daughter is not worthy. I am truly sorry that you have to go through this. You and your family are in my prayers.
Absolutely disgraceful Has to go against the promise doctors make of first of all to do no harm .They are doing harm by not treating the child. At the end of the day she is a child like any other .Just a child who needs a chance.I used to be a nurse . I am a mum of a child with autism and he has changed me for the better .Many have read your story here in Ireland and we are behind you 100%. Keep string you are in our thoughts and prayers
I honestly thought this was some kind of sick joke or that you were living in some awful third world country. I cant believe that in this day and age this could happen. Im frightened by it and will be making some calls in the morning to make sure this is not going on where I live in Ireland. Keep fighting for your daughter. She is, of course, worth it. I cant understand this.
what a truly horrendous story. I cannot imagine your pain or anger or disbelief, but I share them with you. My hospital nearly terminated my child when they found out I had ovarian cancer. I stopped it the minute I heard the words ‘your baby wont make it’. I asked again and was told that he would if I left the surgery for 13 more weeks. He is 12 now and staring high school in a weeks time. These people are souless. Keep trying and I am sure Amelia will have the life god gave her. All my Love, Sally
This may be the saddest thing I’ve ever read. This little one deserves a chance as much as anyone else.
I am so sorry and thoroughly disgusted. I am a licensed social worker and I believe she acted very improperly. Of course, she had a choice a) follow our rules of ethics, or b) preserve her employment.
OMGoodness!!! I, too, am a mother of a specialneeds child. It seems that we as parents mist FIGHT for everything, every service for our children. People ate always labeling them because of their delay, but if any of these doctors, social workers, etc could spend even just one day with these children their opinion would change! These children are more deserving than anyone! They are precious souls that can do nothing wrong! God made them!!! I am appalled!!
I am a single parent of a 12 yr old special needs child and have had similiar problems with my child at CHOP. They have treated my child as though he isn’t worthy of being alive. Its infuriating and pathetic that doctors don’t bother to read about the syndromes and issues our children have and learn that they are just as worthy of these procedures as ‘healthy’ kids are. I am sorry this is happening to you. I have taken my child’s care to Hershey Medical Center and it is defintely worth the 2 1/2 hour drive. We are people out there versus just another specimine at CHOP.
My heart goes out to you. I have a daughter with DS who is 10, and a sister who had a kidney transplant 19 years ago (and yes, it’s the SAME kidney for 19 years) I was slated to be the donor and then she built up antibodies to my blood…long story. The point is your daughter won’t necessarily need another transplant in 12 years. You get a LOT of misinformation from doctor’s during these procedures. If you need anything or want to talk or I can help in any way we live in Doylestown. My daughter’s has had 3 surgeries at CHOP in the past six months, which I am reconsidering for her future care based on your treatment!
How is this discrimination not illegal? How can they predict a child’s future? I am appalled. I will be sharing this. What other ways can we help? Have you started a petition?
This is horrible. I can not imagine being told my child doesn’t have a right to live. I’ll be praying for your family. And the picture of your daughter is beautiful. Her smile alone says she WANTS to live. *hugs*
You have a beautiful daughter, I found it upsetting reading this and felt angry with you, and then saw the pictures of yr daughter, and thought how can they say this its awful. I wish you and your daughter all the best, and hope you are able to find someone willing to do the transplant very soon. Good luck
It is shocking, and hard to believe that a child would be denied life-preserving treatment just because of a DD. I am appalled. I had no idea that this type of policy is going on in this age, in this country. Prayers being said for you to continue to be “very involved with Amelia” and to make the change (of “policy”) that is so justly needed.
Your daughter is beautiful, btw.
This is sounds like a case of discrimination to me. It is appauling that a medical team would not do something to improve the quality of your daughter’s life. I thought they took the hypicratic oat??? I would take your daughter to another doctor. I just can’t believe this is happening in our day and age. Don’t give up hire a lawyer if you have to, but don’t let them get away with this. You sound like a fighter, fight fight fight. May this pass quickly and god bless and keep you and your famiy. All those doctors should have their licences taken away from them……..What a shame!
I think it so upsetting because doctors are supposed to be there to help, and comfort in times like these. And here he Is insulting your family and denying you because your daughter had some developmental struggles. But just because of that, it does not
Mean she is not WORTHY of a surgery. It’s the most pathetic thing I have heard of. It definantly breaks my heart and I am praying for that sweet little Amelia abd your family. That God will put a fantastic doctor near you that won’t discriminate who he will perform surgery on. I pray god will put his shield over your whole family and protect you from harsh words of others. I’m praying for you and your family. Your daughter is so adorable and deserves to have a future!!
where do we sign the petition?
I agree that your daughter has as much right as anyone to a transplant- and that this doctor & social worker’s comments are henious… but as far as forcing CHOP to have this transplant done there– at this point in the game, I’d wonder if your daughter (and even your selves) would receive the best care.
Personally, if I got this sort of response- and it seemed to carry over to the rest of the hospital staff, the last thing I would want to do is entrust the life of my family to them.
I’d be afraid that something would go wrong– an infection, a medication error- and they’d disregard it because “It would be better on the family if they weren’t so burdened.”
I couldn’t trust the life of my family to someplace that sounds as if they agree with health rationing.
Sounds like a case of discrimination to me. Grab a really good lawyer and hit the media.
I know exactly what u r going through. My son as seen since birth at CHOP for moyamoya. He is extremely delayed do to strokes. By 18 months his liver was failing….At first they told me he had lots of time. Within 3 months he was barely alive. They told us the same thing he did not deserve transplant do to poor quality of life. they would not list him…his father and I r both blood match donors. They did not even let us met w ethics dept. It was the worst feeling ever not knowing what to do. I started calling hospital all over the country because I realized no matter what we did CHOP was refusing. Also at this point I was furious and just wanted out of CHOP. Tyler was now in PICU w a few days to live his kidneys were also now failing and he was bleeding out. A miracle happened that day my insurance case manager was also helping me contact hospitals. We found AI Dupont…they believe ot is the parent choice to go forward w transplant…we had Tyler transferred he was listed that day while his dad was being tested for donation. He was transplanted 5 days later w a piece of his dads liver. That was June 2008, Tyler is still w us today. AI Dupont is 35 min from CHOP….the care is a billion times better
My God I would have never thought people still thought like this.I too have a son who is disabled.And frequently has Dr visits at CHOP.Which is suppose to be a very good hospital. I am so sorry you are going thru this.I thank you for making us aware. With everything parents of disabled children go thru this should not be one. Our children mean no less than healthy children.I will pray that you find some peace and someone with a heart to help your family.
I am so sorry and appalled for what you are going through. It is incredulous in this day and age. My thoughts and prayers go out to your family.
I’m so sorry you were treated so horribly. You and your daughter deserve better. The decision to refuse treatment based solely on the basis of mental retardation is truly reprehensible.
And I wonder about these doctors who refuse to perform the transplant. Do they realize they are following in some pretty notorious, evil footsteps? The mentally retarded have been used as guinea pigs for over a hundred years. Not only experimented on, but sterilized among other abuses. I suppose the good doctors of CHOP would like to sterilize patients with MR, too? Maybe self preservation will change their minds, or preserving their future earnings: I heard on the radio a few days ago about a law suit in a couple different states to award monetary compensation to mentally retarded patients who had been sterilized up through the 1970s.
I also wonder how far they go with this arbitrary God-complex decision making? When do the eugenics stop? Who else isn’t good enough to deserve treatment? I’m healthy in all things, except I struggle with bouts of depression. My brain doesn’t function normally, though I have high intelligence. Would I qualify for a transplant if I needed one? Or, maybe it needs to be a little more severe disability? My son is being evaluated for Aspergers with ADHD and SPD, he has high intelligence though his behavior is severely effected by his disabilities, while his body is quite healthy. How severe the disability before you’re considered a waste of good air in the opinion of people who have the power of life and death over you?
It sickens me that because so many people don’t see the joy and self discovery that challenges bring, they deem your daughter worthless. The challenge of having disabilities doesn’t lessen the triumph when a person overcomes obstacles or reaches a goal. The challenge of being a parent of a child with disabilities brings joy and self discovery, too. The journey is valuable, no matter the circumstances.
I am appalled. How is it that people decide someone else’s quality of life isn’t sufficient, or that, because in 12 years or 24 the supports may not be there for it, a life doesn’t matter now?
I strongly doubt that my quality of life would be deemed ‘insufficient’ to warrant a transplant if I needed one; yet it’s highly likely (I’m severely depressive) that it’s much less than that of a loved child. There are times when ‘quality of life’ is quite patently a euphemism for something much nastier.
I expect you have some excellent letter writers reading this post. Can we help that way?
Of course this is an outrage; it’s a cowardly, passive-aggresive form of eugenics. Talk to a lawyer to see if there is any legal action you can take under the ADA or Civil Rights Act, because this is clearly discriminatory.
This is very disturbing!
Very discusting!
I can not believe in this day in age doctors still consider the mentally challenged as not worth helping.
I will keep your family in my prayers.
If there is a patition I would love to sign it.
My email address is listed on here.
I hope you find the miracle you are looking for.
My heart goes out to you…I can’t imagine. But, my only thoughts are, get out of CHOP!!!! Go somewhere, anywhere, else that will listen. There have to be doctors who will hear this and realize that it’s not right. AI Dupont is only down the road. Anything to make it happen!
I didn’t read all the comments so perhaps these suggestions have already been made but here:
1) Go to the ethics committee and the patient advocates at CHOP with your story and begin that process now.
2) Find a lawyer who specializes in medical ethics to help you. Start with the best you can find (the ones who write the books or papers and teach at the best schools) and ask them for help.
3) Research if other hospitals in the US have done transplants for DD children (or adults). Contact those hospitals. Contact those families if you can. Learn the outcomes. These cases strengthen yours.
4) Continue with getting the word out. Contact local press with your story.
Since there is the possibility of needing the kidney in 6 months, I would not wait for the transplant committee to meet but act now.
Prayers to you and your family.
Quite frankly I am not surprised. The world has been a shocking place since the fall.
God be with you as you continue to fight for justice.
May every battle give you even more love for Amelia.
May the doctors see that love for a child, retarded or no, is always worth the life… after all, that’s the only reason we’re still here!
Compared to the Almighty, we’re all retarded! But instead of killing us all God sent His Son to deal with sin and death… to love us.
This is bull s***. Amelia’s parents u just stay strong and fight for ur daughters life. Dont listen to them, and dont ever give up ur baby needs u. Good luck ill be praying my hardest for Amelia. I hope u show those son of a b****** that when u dont give up and fight ur hardest ull succeed. God Bless You all.
To Amelia’s parents:
The Philly FOX news station wants to contact you re: Amelia’s situation and this story ASAP.
Contact them at 1-215-520-5913
or
omari.fleming@foxtv.com
if you’re interested. They may be able to help.
I’m fairly horrified right now. That’s the most obscene thing I’ve heard in a long time. I don’t think they should have the right to refuse a treatment due to the reasons given. It would be something else if the risks of the surgery outweighed the benefits – that would be something all together different. I think if your family is willing to donate the organ and foot the bill for these procedures or raise the money for them, than I think it should be approved. A person who gives someone a 6 month to a year death sentence because they’re mentally retarded really puts their own intelligence at question. What harm are they doing to a child by giving them a chance of 30 years of life over 6 months? Yes, the child might suffer further brain damage. But, the doctor himself is at risk of being in a car accident every time he rides in a car. Should he stop driving or riding in vehicles because of that statistical likelihood? Just outrageous.
My heart aches for you. My child is also developmentally delayed with polycystic kidneys and will need a transplant some day. This INFURIATES ME. Everyone on that ethics board and every surgeon and doctor involved in this decision has a special place in hell waiting for them. May they never have to go through what we go through on a daily basis.
I’m reading this story & I’m sobbing out loud. I will never understand how this can be aloud to happen like this.
I wish I had the words to respond to this story, the words that would make you feel better, but I don’t. I am so sorry this happened to you. Anyone I’ve told simply can’t believe it. The fans of my FB pages can’t believe it. My personal FB friends want to do something, anything to make this right. I am going to share your story on my blog in the hopes of reaching more people, in the hopes of demanding something better for our children, in the hopes of starting an outrage so great, no one would dare measure another person’s worth based on a disability. Hang in there. Know that you have many people behind you praying to a higher power to help. If ever there were a case that higher power would listen to, surely it’s this one.
What a precious adorable daughter you have. Your child deserves this transplant even more than a “healthy” child because she has already been disadvantaged by her disability. God changes things! I will pray every day that you will find a good Christian doctor who will help this beautiful girl the transplant she so clearly deserves.
I am so sorry you are going through this. A friend of mine just gave me this information:
This is a Section 504 violation, and you can file a formal complaint with the OCR. http://www.hhs.gov/ocr/
Hope it helps.
Riiiight… because they think that quality of life will be much better for a developmentally-delayed kid on dialysis?
I agree with the other commentators. Go see a Lawyer NOW. Do not delay. I’d also take this to the media. Show the papers, name names — Peruvian doctor, social worker, and all — and make sure CHOP ends up with a PR disaster.
Make them pay.
I am in tears and appalled by that. I’m so sorry! I’m going to share this on my FB. I’m sent over from Diary so it’s my first post of yours I read but it’s obvious you love your daughter and you’re fighting for her. Don’t give up! Hugs and prayers for you and yours.
I have run into this kind of thing with my wonderful son Kevin, he is severly autistic. Teachers and parents giving me greef that my son is draining the system of money that can go to normal kids. Bla, bla, bla. Without even realizing what this attitued represents ? Maybe this is what we should be talking about ?
The fact that this is in writing is so outragious, not to mention the discrimanation involved. It is disapointing that many in this country have lost respect for human life. They look at the numbers and that is all they see.
The question is how are we as a group going to take care of this ?
Nobody should have the right to tell anyone who is deserving of a transplant and who isn’t. Go to another hospital with a transplant program and apply with them. Just because your hospital doesn’t think she’s a good candidate doesn’t mean she can’t be a candidate somewhere else. I worked briefly in an Organ Transplant ICU and I saw patients from all over the US and even other countries come to the hospital where I worked. Some came because we had the lowest wait time (for certain organs) and some because they had been denied at their local program. Don’t give up!!!
On a side note, stories like yours is what scares me about National Healthcare. I fear that once healthcare is national. . people in your situation won’t be able to go elsewhere for a second opinion. You get denied, you get denied..national decision. It’ll come down to cost vs. benefits and some committee sitting in a board room wearing suits (that have never laid a finger on a patient) will make those decisions. . SCARY.
Sad to say but this is what we get from those who voted obama into Office! This is exactly what obama care is all about. If they consider a persons quality of life to be minimal, you will NOT get care! Its the beginning of a Population Reduction Plan. We have to face the facts OR We have to get obama Out of Office and Do away with his obamacare!
Is it possible that the parents have not revealed the entire story. I have read several posts regarding this and there are several holes in the story. One is why is this family travelling from TN for care in PA?There are at least 20 hospitals that perform transplants closer to them. Also one post mentions that Amelia has a congenital heart defect as well. Could this be an issue? We are only reading what an emotional and passionate parent perceived. CHOP cannot comment on this specific case or it would be a HIPPA violation. Perhaps the entire story isn’t infront of us. It just does not seem completely realistic that her developmental issues are the only reason they would not perform the surgery.
Chrissy,
Your story has left me speechless to think they call themselves doctors and took a oath to save peoples lives but Mia is not eligible for a transplant is ridiculous.Do they even know Mia? Do they know the love she has brought to you and your family? Do they see her smile? Do they see the excitement in her when she is happy? You keep fighting for Mia and hold onto your faith that there is a God and He will answer your prayers.You have alot of people praying for Mia and pulling for her transplant. Good luck!!!
Kelley Hoff
I’m a mother of three children with autism, one of whom has an IQ of 70, which is borderline. I’m with the woman above who said get a good lawyer and go to the media. This just disgusts me. Just signed your petition on Change.org, and I hope that it helps. I have lost a child, and it’s the worst thing I’ve ever had to go through. I pray that you will be able to have Amelia have the transplant, and that you will never know what losing a child is like. (((HUGS)))
Start a petition at Change.org
They have thousands of subscribers. I’ve seen personal petitions like yours get well over 100,000 signatures, In fact, there is one titled “End abuse of Autistic students in Mercer County, Kentucky” this has 165 Thousands signatures.
It’s a free to start a petition and would get your story to a greater number of people.
As an aunt of a little boy with a disability, a service coordinator for developmental disabilities in my state and as a HUMAN BEING I am appaled! Having a MR diagnosis should not keep anyone from receiving the medical care and treatment they need to continue living their life as healthy as possible. I know there are stipulations of getting on the waiting list (life style, age, etc)…but MR? Seriously? Especially given that you are not requesting a kidney off of that list, but are looking at those you know and love to make a sacrifice to save your daughter. Have you checked in Nebraska? I have heard that there is at least one person with MR who has received a kidney transplant…from a private donor. that doctor and social worker should be ashamed. How would they feel if it was their loved one? Their child? Would they roll over just because they were told what you were or would their fight with every ounce of strength they had?
Your daughter is extremely lucky to have parents who understand what it is to advocate for her care and quality of life. Don’t give up hope.
I find this very odd. My daughter has many challenges, has mental retardation, verbal apraxia, and genetic disorder and many other issues. We were told when she was just 3 years old and knew she needed a kidney transplant that mental retardation would NEVER be considered as a factor of eligibility or prevent her from being able to do that. We are just down the road from you and our daughter is treated a Johns Hopkins Hospital. She’s had two kidney transplants so far — one at age 6 and one at age 10. She is now 16. Yes, the side effects of the drugs can be hellish, in fact, my daughter got cancer because of immune suppressant drugs (thus the need for her 2nd transplant). Again, I’m mystified by this and find it difficult to believe that any hospital would use mental retardation as the primary criteria for determining transplant eligibility. Best of luck with your daughter. Sending much love and light your way.
What concerns me beyond the doctor’s attitude (which, by the way, sounds institutional to me – he was “warned about you”? He has a meeting where he feels comfortable talking like this?!) was your social workers. She smirked? She said that?? I hate to add to the burden but she has professional influence, too, that may be blocking you. Good luck and our prayers are with you.
Why don’t you go to another country to have it done? Countries like Thailand and Cambodia have EXCELLENT and modern healthcare facilities, they are very reasonably priced such that you can probably afford it without insurance, and you will find that the doctors there really care about you, make time for you. It’s a different world, and one I think you will like. It’s worth a look. In your shoes this is what I would do. I would get out of my US-centric mindset and start looking all over the world.
It’s sad but very true! Keep fighting for your daughter and God Bless You!
PLEASE, contact Georgia Health Sciences University in Augusta, GA.
Our granddaughter was born with a very rare chromosome disorder (trisomy 8 mosaic syndrome). The doctors here have been absolutely wonderful in caring for her. NOT ONCE have we heard “we can’t because of her developmental delay” when planning her care.
http://www.mcghealth.org/pediatric-transplant/GhsuContentPage.aspx?nd=1865
There is limited room at the Ronald McDonald house, but you are more than welcome to come stay with us, It is a 2 hour drive, but we will get you to and from the hospital.
I will be sharing your story. KEEP FIGHTING! and we will KEEP PRAYING!
They don’t live in TN.
I’m in San Diego. 29 minutes from Children’s Hospital and Ronald Mac Donald’s house and I too have room for you if they do not. Let me know.
There’s way more to this than meets the eye.
I’m a quarter century heart Tx and a 12 year (this Tuesday! *grin) kidney recipient who happens to have a sister with Cerebral Palsy, so I have a unique view of this. My sister however is quite high functioning and is self sufficient enough to take care of her own personal needs, pay bills, grocery shop and etc. Will this be the case with Amelia? Judging that in her photos the chair she is seated in is designed to hold her lower body rigid, I’m thinking that perhaps she will always be reliant on others for her care. If she will never be self-reliant that means she will likely need to be in an assisted living facility after her parents are no longer able to care for her. Factor in that over her lifetime she’ll most likely need several kidneys and we’re talking about a very heavy financial burden indeed.
But here’s the rub, besides looking at who an organ matches best they also consider who will make better use of the organ. So they figure that kidney would be better used by an otherwise healthy child who will one day be a productive member of society. True enough, that child will also need several donors over his/her lifetime. But that child will, in theory, be able to take care of the transplant better throughout his/her entire life and make a contribution to society.
So, to me it makes sense that they would deny a [severely] mentally handicapped person a transplant. But here’s the real question, is it fair to Amelia to keep her alive when her spirit is trapped within a defective body? In a way, it’s selfish of her parents to condemn her to this sort of life and they should think very long and hard about the long-term quality of life Amelia will have. When my sister was born, she was in trouble and they took extraordinary measures to save her. As a child she harbored resentment that she hadn’t been allowed to die at birth and now she’s stuck here in a body that doesn’t work right. It’s a shame they can’t ask Amelia what she wants.
By the way, without a transplant Amelia will not die. She’ll be put on dialysis and could live that way for decades. I don’t completely agree with denying her a kidney based strictly on disability but then, I don’t completely agree with keeping someone on life support when there’s no hope for a reasonably good quality of life either. This is a question of ethics and each case MUST be considered from many angles and done on an individual basis. But would it be fair to deny the bright, athletic child a kidney so as to give it to a severely mentally and physically challenged child. It may not be fair but, to me it makes better sense to allot that kidney to the healthy child. There are those who will disagree with me and that’s okay. But as a parent myself I can see what Amelia’s parents are confronted with and understand their pain too. But it’s not discrimination, it’s making the best use of a very limited resource.
This child should be provided treatment and not base it on what these people consider her “quality of life” just because she has a diagnosis of MR and her future is “uncertain.” We need to value ALL human life from conception to natural death. If they would perform this transplant for a “normal” child they shouldn’t be denying this child the same treatment. Its bad enough that many would target this poor innocent child for the death penalty while she was still in the womb, but now she has to endure this bigotry after birth. What a sad world we live in. God has a plan for her just like He has a plan for all the children He creates.
Utterly flabbergasted. You should demand an official letter from the doctors/hospital with regards to their decision and the reason(s) behind it. If they ask you why, tell them you need it to consult with attorney(s). I’d like to see how fast they backpedal…
this is unconstitutional. It’s illegal. The same as if she could not get a transplant because she is female, or Caucasian, or Methodist. Her constitutional rights are being denied. Get a lawyer.
TO KevinO: what do you mean by your comment “they don’t live in tn”? i live in tn. thanks! Have you tried Children’s Hospital in NC,(Duke in Durham)? there’s a Ronald McDonald house there, too. Praying for you and your beautiful daughter!
Please consider a letter and pleas for Amelia.
I do not know this family. I located information all on
my own. Consider mail, fax, and emails..
January 15, 2012
Administration & Foundation
Stuart P Sullivan
sullivans@email.chop.edu
The Children’s Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia, Pa. 19104
Fax – 267-426-6530
Telephone – 267-426-6500 8:30 to 5:30
Nephrology Dept: Pediatric Nephrology Fellows
• Susan Furth, MD, PhD, Division Chief
• Divya Moodalbail, MD
• Rebecca Ruebner, MD
• Danielle Soranno, MD
• Joann Spinale, MD
• Tamar Springel, MD
• Smitha Vidi, MD
The Children’s Hospital of Philadelphia Foundation giving@email.chop.edu
Lockbox #1352
P.O. Box 8500
Philadelphia, PA 19178-1352
To all staff, Please do not deny Amelia her life.
We (my family and friends locally and Facebook) are very stunned and saddened that a hospital like Children’s Hospital of Philadelphia would seek to deny Amelia a life saving organ transplant.
All people may at any time be impacted by knowing, loving, or becoming a person with a disability. We live in a country where each person is valued as equal. It is not for a committee to reason out some twisted version of any other person’s inalienable right to life, liberty, and the pursuit of happiness. Please change your own hardened hearts and misguided minds and allow Amelia to live out her life to the fullest.
We all walk a special path in life and each moment is precious. Do not deny this little “gift of humility and joy” the right to her own life. Furthermore, I will never donate to CHOP and its foundations knowing that such practices are in place. I will remind others of CHOP’s poor, discriminatory attitude towards the disabled.
Sincerely,
Noreen, Edd, Luke, Justin, and Paul Ringlein
CC: Social Workers: Caryle Glah, MSW, LSW, MEd,
Cynthia Green, MSS, LSW,
Kimberly Sterner, MSW, LCSW
This is just disgusting, this doctor should have his license taken away. How the heck can he say she doesn’t have the “quality of life”? I work in the mentally disabled community, and ya know what they are the BEST group of people I have ever met. Just because they might not be like me, they also have the same human rights as anybody else. And as far as medical attention goes, I would spit in someone’s face if they said otherwise. Stay strong and keep fighting, I’m rooting for you and your daughter.
We go to CHOP for all of my daughters medical needs – and she has A LOT of them – I am appalled at this!! My daughter has had heart surgery at CHOP and GI surgery – would they tell me that she can not have a transplant because she is mentally delayed? She has the BEST personality and sense of humor – everyone who meets her loves her – I would fight, fight and fight some more – you and Amelia are in my prayers. Definitely contact a lawyer – they are discriminating against her and that is NOT RIGHT!
Darlene
I am sitting here sobbing for you. I know that room. Not that one specifically, but the conference room where the Dr.’s try to convince you that you’re the idiot and they know what’s best for your child. I fought for my son and in the end was right. I will pray for strength for you both. Don’t ever any action or words spoken in the fight for your child. My heart is with you!
How apalling. It saddens me that anyone who have to go through such an ordeal. I too have a sick little girl. That stress alone is enough to drive me batty. Just recently my daughter’s doctors recommended she go on a certain medication. A life saving medication. I really do mean that without this medication, my daughter could in fact die. This medication is very very expensive and not available in our Country. Our insurance company first said they wouldn’t cover it, then our government did the same. We appealed the insurance companies decision, and after carefully reviewing the facts, they have decided to cover the medication. It has been a fight but worth it. Its always a fight, and you never ever give up!!! You can’t.
When we first went in the hospital with our little girl, another sick child’s parent told me “God only dishes what we can handle”. You can handle this. Maybe another parent would accept what the doctor said to you that day, but you WON’T. Keep fighting. Why should a doctor have the right to determine if your child gets a chance at life?
You will be in my prayers and I hope I hear good news in the future.
God Bless!!!!
This is so reminiscent of Nazi Germany that it turns my stomach. Erika, above, is correct. This sounds so unlawful that if it isn’t, it should be.
Good luck with your little girl and never stop fighting, not that you need to be told that. You are a good Mom, don’t forget that.
This is just plain wrong. Facebook folks have been contacted in 8 states and the news is spreading. Please call the Children’s Hospital of Philadelphia at 215-590-1000 Ask for the CEO – – Steven M. Altschuler. Let him know what a bad decision this is. I plan on calling Dr. Altschuler tomorrow and hope many others will do the same. A great tribute to Dr. King and to help Amelia.
I am so sorry this is happening to your family, to your baby. The Autism parent community is with you. We have been sending the links and petition around like wildfire. Please keep everyone posted, if possible given all that’s going on. And by all means, let us know if there is anything we can do.
So then they are refusing her treatment. Is that even allowed? I am so sorry you are having to battle this. Such a horrid story…. yes, it does make me angry. Much luck and prayers your way
Jacky
Keep up the fight till they answer
Unreal.
I’ve shared this on my own blog and sent in a tip to Hot Air.
You are all in my prayers.
We had a very bad experience with Chop with our daughter. She was having seizure/ stroke like activity.All scans were negative, the neurologist discharged her stating she was attention seeking and discharged her with a diagnosis of behavior conduct disorder. we were beside ourselves as we watch my daughter have these episodes over and over.She was in 2nd grade at the time. We refused to pay the hospital bill and went elsewhere.She is now 22 and had complex migraines with a blood clotting disorder which can cause her to have a stroke.My story is not as horrific as yours but my point is be your childs advocate and keep trying til you find a Dr. who is willing to help your child. Children are a gift from God no matter if they have an illness or not. EVeRY CHILD DESERVES TO LIVE .I am a nurse myself and this is so frustrating. Who are the Dr.s to decide if your child is worth saving.This is your decision not his.Keeping you and Amelia in my thoughts and prayers.God will guide you through this.
No child should ever be denied any sort of health care…regardless of their mental status. Unacceptable on every level.
The same thing happened to my niece, they sent her home to die, she had Trisomy 13. She lived 32 days without the help of doctors. Doctors are NOT GOD and they do not choose who lives or dies. You are given a gift to save lives so do your job and save this childs life!!!
Writing to apologize just commented you and called your daughter Amelia,I meant to say Mia. My apologies again . God Bless
I agree with those who suggest that this is a human rights issue. My heart aches for you in this struggle with the “system.” Please keep trying . . . and please keep us posted!!! Are there patient advocates at CHOP? I hear so many good things (per Paul Offit) about that place . . . Another option is to go to the press. People need to know how the “Treatment” team at CHOP is treating you. (actually sounds more like a management team – as in how are we going to manage these parents????)
Does anyone else feel this is an echo of nazi germany? Hitler wouldnt have helped this little girl either…in fact he would have “gassed her”. Is this where America is headed? WE CAN NOT ALLOW AMERICA TO BECOME AS HEARTLESS AS NAZI GERMANY!!!!! EVERYONE GOD HAS ALLOWED TO BE CONCEIVED AND BORN MUST BE GIVEN EVERY CHANCE FOR HEALTH AND HAPPINESS!!!
I work at an adult group home and our clients all have various diagnoses with cognitive delays. just so that “doctor” knows, my clients range in age from late 20’s to late 60’s! If he’s comparing her diagnosis with the length/quality of life he needs to come and spend even five minutes with any of my clients because each and every one of them most definitely deserves as long of a life as everyone else. Your case is so frustrating and I would bet that those “guidelines” would be changed if we were talking about their kids.
I don’t know you but I pray that you will receive the help that your little angel deserves
Erica is right-this is blatent discrimination! Go get that attorney mama bear and kick some butt for your cub! Praying for you all!
Got one more supporter here. Will be praying for you all and will be doing what I can to support publicly to get a turnaround for your daughter and all others that deserve one.
I have had positive and negative first hand experiences at CHOP. I am appalled (the nicest thing I can say) that you, your family, your child was treated like this. However, I have something that I hope will help. After my last experience with CHOP, I packed my son up in an ambulance and took him to A I DuPont Hospital in Delaware. Never had he been treated so wonderfully. The experiences there were superb and worth many return visits……all his surgeries were done there. DuPont does some pretty impressive things with children. I offer you this information for both you and your child. She deserves every opportunity to grow and be the woman she is meant to be. Best Wishes!
I am angry and I will be sharing. How dare they!
I have a client in a group home who is mentally impaired and has a kidney transplant and is a success transplant for 12 years now in Michigan done at william beaumont Hospital in Royal Oak Michigan Dr Roche and dr. speck and his own mother gave him her kidney. the nicest family in the world and he is very nice young man he is age 42 years old. so dont stop fighting for her right to live and have proper quality of life my prayers are with you…..
There are truely no words to say just how angry your story made me. Your precious daughter deserves EVERY CHANCE at life, just as any other child/man/woman does! It is my prayer that our heavenly Father will cause the heart(s) of the next professional(s) to really hear you, and to FEEL for this child.
God bless your family.
Erica, this is NOT illegal, nor is it unconstitutional. Doctors have the right to deny service of a patient, ESPECIALLY if it means dodging possible malpractice. If she did get the transplant and took the meds, she’d have more brain damage and likely die. Then the doctor gets sued and can’t practice.
Doctors don’t -have- to serve you. There’s no constitutional right that says anything about doctors. PLEASE learn basic law before claiming something is “illegal”.
start a petition on change,org, voices in numbers can make a difference!!!!
I am a social worker and this is absolutely not acceptable. Please, file a complaint with the National Association of Social Workers (NASW). I don’t know how it works but if she’s a member depending on her standing maybe they will sanction her. I don’t know but we are called as social workers to promote client self-determination and especially the rights of everyone regardless of condition or societal standing. This social worker is violating our professional ethics and I am furious.
I am so sorry this has happened to you. Some medical personnel, including doctors, simply should not be—they are not fit for dealing with other people in this capacity. I have long thought they enjoy being in control of other people’s lives but these doctors sure do not manage them well. Yes, this makes me mad.
I am praying that you will get some help through some real humans out there, whom have some resources or that one of the offers you have recieved already will be the option you need. God bless your family and the people who reach out to you with a pathway to help Amelia.
ask to have the conversation with this dr. again, and tape it so that you can listen to it again and so that others can listen to it also. in all likelihood, amelia’s condition is such that she would not survive the medications necessary to keep her alive, or they would make her condition profoundly worse. due to HIPPA law, CHOP cannot respond publicly to these charges, but i suspect there is much more to this story than is included in this post.
I would take this right to the news. It is amazing how fast things change when it becomes everyones business and that is free to do. If you want help to find newpapers or broadcasters that will help let me know and I would be happy to help you. I know you don’t know me but I am appalled. Doctors take an oath to help people no one made them God where they can choose who is worthy of life. Your child is a blessed child of Heavenly Father and more prefect then many know. I will be happy to help.
This hit me hard right off the bat when I saw the ‘Three years’ thing. I was like, ‘She has been doing this for three years?!” I’m only about a year and a half in and I’m still in the ‘Oh, even though you gained 30lbs in water from your kidneys failing and you’re urinating blood, we still have to do a million tests before we can take your pain away.’ Which makes me mad. Because, the pain from kidney failure is unbearable. But for some, it’s worse than others. I am one of those people. I am only 18 years old and I’m having pain that mothers with the same affliction, have compared the pain to being as bad or even worse than labor. So, I’m sitting here thinking … ‘This little girl is being put through this pain just because she’s mentally challenged?!’ It’s unbelievable! It’s inhumane! It’s ILLEGAL! Well, at least it is here in TN. We have the ‘Good Samaritan Law.’ Which says a doctor must do EVERYTHING he can before he gives up, from my understanding at least, I don’t know everything about it. This has seriously disgusted me and I’m sitting here wondering where the petition is. I’ll get every member of my family and every single one of my friends to sign it. I’ll spam it all over the internet. Hell, I’ll paste the petition link all over my town. No one deserves to be treated like this, no one. Please, contact the make-a-wish foundation. They can give her a wish and they can get the word out about her predicament. It may sound shallow but, big publicity has a big influence when the doctor is being criticized for being a jackass. If you read this, please comment directed at me. I will do ANYTHING I can to help you and her. She deserves treatment as much as the next girl. She’s beautiful and I can’t imagine why anyone would treat her badly like this.
-Yume-
You need to request a meeting with the Chief Executive Officer, Dr. Steven Altschuler. I would also recommend that you share your story with as many media outlets as possible. Include US News & World Report. CHOP consistently rests their laurels on their #1 Pediatric Hospital ranking. This treatment is no way #1 status. Contact newspapers and as many television news outlets as possible.
Keep fighting for Amelia and never give up. She is totally worth it!
I am so sorry to hear this very sad news. This world is not a kind place for people with disabilities.
Don’t ever give up or give in!
I will keep your family in my prayers.
Phyllis
This is a duplicate comment, only because I am not sure you will have read it on the other post.
After reading your story, I thought I’d check out the website for CHOP. I found the patients bill of rights (http://www.chop.edu/about/our-philosophy-of-care/patients-bill-of-rights.html) and to my shock, the second one listed states, “Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.”
I hope the administration there can explain to you how being refused for surgery based on the merits of mental retardation fits in with this right. Especially if you are not asking to take someones place on the transplant list and you’re fully prepared to handle the medication she will need to take.
I hope you find the courage, energy, and funds to sue the hospital and specifically name any personal directly related to the decision in your case.
Please keep fighting for your daughter. Although I’m fighting different brick walls for my son; I am familiar with the transplant system, as my Dad had a heart transplant on May 10, 1994. ALL of the odds were against him for many many reasons; but, the doctors did what was right and did not descriminate against him (in comparable type health reasons as your daughter is being denied) … and you know, he is one of the heart transplant recipients who have exceeded even the average life expectancy. So, don’t let them disregard your daughter … and I know you won’t. My almost 16-year-old son would never have even met his Pops, had my father not had the transplant almost 18 years ago. And, honestly, my father has had, and current has a better quality of life than I have had for the past 10 years … so, much of what the doctors says about “quality of life” is just their opinion, based on the data they have compiled to-date ….. so, what about improving the quality of life for your daughter, and giving her a chance and a future. Blessings for you and your family.
~~ Elizabeth & Andrew
I know this is going to be hard for everyone to hear but unfortunately, the number of people needing organs highly outnumbers the number of donors. My son received a liver transplant at CHOP and received the highest quality of care by wonderful doctors and loving nurses. When deciding who is the best candidates for the available organs, there have to be guidelines. And yes, these guidelines often discriminate against those who have additional medical complications. For example, if deciding between two potential patients who need livers and one of those patients also has heart complications or cancer, the liver is most likely going to go to the patient without additional illnesses. The more complications and illnesses a patient has the more difficult a positive outcome of transplant. Donor awareness is what is important. If more people would consider donation, the limitations would decrease.
There is a law in California that was passed, California State Assembly would pass a law prohibiting transplant centres from discriminating against the mentally impaired. I would pack up and go to california!
A friend just posted this story on her wall on facebook. About 2 days ago, CHOP posted an article regarding how they DO NOT pick n choose who receives a transplant based on if they have disabilities. They did not mention your little girl or family, just generally stating everyone has the same opportunities unless how sick they are puts them at the top of the list. I have had many problems with CHOP in 2011 with my son who has Down Syndrome and Autism and was diagnosed last yr with Moyamoya disease and needed brain surgery. We wound up going to Boston Children’s Hospital to have it done. I sought help from social workers, my committee people, even as far as the governer’s office…..no luck! It is a DISGRACE how much the insurance companies and drs, hospitals have control over you and your families life. KEEP FIGHTING, DO NOT GIVE UP. Go to television stations, newspapers, anywhere to have your story heard. Best of luck to your beautiful little girl!
I have a 6yo son with Down syndrome. He has had 2 open heart surgeries and his surgeon told me once that not too long ago he wouldn’t have been offered corrective surgery because of his Down syndrome diagnosis. Children with his particular defect who don’t have it corrected have an average life-span of 4 years, maximum of 7. I’m sorry but your post makes me want to scream.
WE ARE SUPPOSED TO BE PAST THIS POINT! WE ARE SUPPOSED TO KNOW BETTER! OUR CHILDREN ARE WORTHWHILE! THEIR LIVES ARE WORTH LIVING!
I’m sending you my prayers and will tweet/facebook post my little heart out. Somewhere out there is a team of doctors at a hospital that are made up of caring humans. You will find each other.
In response to the lawyer suggestions, try contacting Disability Rights Network. They make take up your cause and provide help you don’t even realize you could use.
Speechless. Disgusted. I posted this to my FB page earlier today and have received the same response. I’ve been pondering what I can do to help in some way- a stranger on the other side of the country. All I came up with was the possibility of starting a change.org petition for you to deliver to the hospital or whomever else you think may be affected by thousands of people being in the know of their practices and not being ok with it. Please contact me if this is something you are interested in me doing. Many blessings to you and your beautiful daughter.
I’d like to add this to my world fight page, on my website. http://www.mumonamission.org I dont care what is wrong with a child or person with a disabilities they did not purposely cause the harm that puts them in need of a transplant. How dare they I’m shocked, my mouth is still open wide is shock. it’s crazy and those Dr’s call them self civilized I bet, WELL not in book they are, you know what I have no negative words to describe them right now, I’m in shock.
Take care.
Hope that beautiful girl get thats transplant she DESERVES.
If I’m allowed a photo of this beautiful girl email it to me and I’ll add it to my website with the story and link. Email is website_contact@mumonamission.org
This is a total disgrace. I am shocked. I will be sending the above letter to CHOP along with the other. Even my friend from Australia is shocked about this!
Unbelieveable!
This is the most horrifying treatment! What gives that doctor the right to play God? How many times in the medical field has a doctor “advised” a mother to have an abortion because there would be no quality of life for the unborn child? and then.. the mother ignores the advice and the child is fine… To make a child suffer is inhumane. I can’t imagine how you didn’t grab the doc by the neck and smack some sense in him. I will be praying for Amelia and the rest of your family as well. I am disgusted!!! Love and prayers to you.
As an organ donor, social worker and someone who has worked with people who have cognitive issues, I am nauseous by this. If someone had wanted to deny my brother his transplant on anything as subjective and archaic as this hospital is purposing I would have brought down the roof. I commend you for naming it and getting the word out. There is power in social media and the internet and I hope this hospital and these incredibly ignorant and uncaring people feel it as well. Keep up the fight, we are with you.
OMFG!!! I didn’t read through the comments yet, so I’m not sure if there was something helpful in there, but I want to ask if I’m the only one that read to the end and am still waiting for the REAL reason they didn’t recommend the transplant? Mentally retarded, really? I can’t even type, I’m so pissed. I’m sharing this wherever I can, and I’ll be keeping up with your story. I hope you can find a doctor with a f*cking heart and brain in their body who will take care of your girl!
If this so-called doctor (actual doctors are supposed to preserve life) thinks those with brain damage don’t have any quality of life, why is he willing to prescribe the post-transplant medications that can cause brain damage? What a hypocrite. I bet he’ll feel differently if he ever suffers a stroke. I’ll add my voice to those contacting the hospital on Amelia’s behalf.
The doctor is a jerk! go somewhere else! or get an attorney and sue! that’s discrimination!
I feel sorry for the parents of this lovely girl. However, it does not surprise me that the transplant team at CHOP does not wish to list their child as a transplant candidate. Part of the common manifestations of Wolf-Hirschhorn syndrome are immune deficiencies, particularly common variable immunodeficiency and IgA deficiency. Transplantation requires giving drugs which suppress the immune system even further, which I suspect may be the real reason the doctors there would not proceed. Given the chronic shortage of organs, transplantation is reserved for the patient who is ,most likely to successfully end up with a functioning kidney, and it sounds like she may not fit into that category. Having said all that, I am appalled that the doctors would use “mental retardation” as a reason not to proceed. Sounds like a rather callous doctor to me. Good luck–I wish the parents and their daughter well.
Your story has touched me and I want to help. If you are considering changing facilities, there is a Mayo Clinic here in Jacksonville, FL. Here my friends & family can give you a place to stay, meals, transportation, community & support.
I wish I could call you to personally invite you to my home. Please e-mail me if there is anything we can do. christy.harding@att.net
This is ridiculous. I am so sorry.
I hit all my social sites for you… I’m sorry but this stuff needs to stop.. How dare they tell you that.
I encourage you to start a petition of CHOP.
http://www.change.org
I have also been in those familiar shoes, fighting for what was right for my daughter. It didn’t include eminent death but it certainly dealt with her quality of life.
I applaud you and your husband for not mincing words. DON’T. This is discrimination at its worst, in the United States of America, the land of the free where, “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” – The Declaration of Independence.
God bless you and my prayers are constant for your baby girl.
i am in shock! please dont give up the fight. please go to another hospital. another doctor. another city. anything to hear what you need to hear as well as being supported by that medical community. people with deminished mental cap. have rights too. the right to LIVE, LOVE AND THRIVE!!! may god be with you and your family. love
OMG OMG OMG OMG I AM FUMING WHILE TYPING THIS IS REDICULOUS!!! This doctor should have his license revoked!!!
and mentally retarded is NOT in my vocabular, it is MENTALLY INCREDIBLE!!
GRRRR THIS MAKES MY BLOOD BOIL I REALLY HOPE YOU TAKE THIS DOC & STAFF DOWN!!, she is precious and is the light of everyones eyes! She has touched alot of people including me! Pray everything goes well
Much love from iowa
Its a pity that we have medical personnel who do not understand what people with alternative abilities go through in their daily lives. I am equally amazed that this is happening in the US. If it was in a developing country like Uganda – where I live, maybe we could write it off as another case of incompetence. But this in the US. God help us!
Rather than get angry, we should all sober up and devise means of making medical personnel all over the world conscious of disability and the issues and needs of disabled persons.
What I just read is a common example of unconsciousness and outright ignorance of human rights approaches to doing our work, whatever the proffession maybe.
Its so absurd to say the least.
there is much love for you here. you bless us with your courage. stay strong, you are an excellent example of a great parent. you are making me so proud.
I am so, so incredibly angry for you and will do everything in my power to help you spread the word, to crack open the veil they are hiding behind. Never have I heard something so appalling! As I was reading your experience I didn’t possibly think I could be anymore shocked and then I read this gem “About how involved you and your famliy are with Amelia.” Oh yes, thank goodness someone “warned: him that you are and your family are INVOLVED with your child, it must be so much easier to face down parents and tell them I am deciding your child is not worthy to receive from even a relationship donor. Does this man seriously work with a lot of people whom are NOT heavily invested in their childs life.
I’m so glad that you included a picture of your beautiful little girl. Not that it would have changed my opinion but as I read your story I, in my mind, was picturing a child with such a severe cognitive impairment that they were unaware of their world, unable to communicate at all, a child whose body was functioning but whose mind was really not.I burst into tears to realize that your daughter is separated from “typical” only be a miniscule few points of IQ.
I hope that you push your story not only to your local media outlets but straight to CNN, Good Morning America, shows such as The Doctors and Dr.Oz. Force those bastards to be accountable!
If you need help writing letters, emails, contacting media outlets. I’m assuming that you are able to see my email, feel free to contact me.
That is truly horrible. I’m infuriated—it doesn’t sound legal to me. Could they not be sued for discrimination? However I wish you had not mentioned the doctor’s “Peruvian accent” and “brown pudgy face.” I’m afraid you lost some of my sympathy when you did.
A co-worker (in Maryland) has a mentally disabled daughter who has already received two kidney transplants in her young life. You need to see another transplant team, and file a complaint with the state medical board against the current team. This is truly bizarre. Stay strong, and don’t let them get away with this.
Saddening, infuriating, disgraceful and discriminating.
I am so saddened by your story. I take my son to CHOP to the Nephrology department, and I know the doctor you are referring to. Is there another doctor you can switch to? Or another hospital? Praying for strength for you as you fight for your precious girl… (By the way, she is beautiful! 🙂 )
Contact Rick Santorum! He will fight for you! Watch this clip about his own daughter with Trisomy 18.
http://www.youtube.com/watch?v=A4NZI0Qh4gM&feature=share
I think this is outrageous. Everyone is entitled to any kind of transplant. Maybe you should go to New Jersey, I know of a mentally challenged individual who has had 2 kidney transplants in New Jersey. Good luck and God bless
I can kind of see why they might feel that way, but still she’s a life and a child deserves the right to be loved and given a chance at life. My son went through a lot of medical problems and almost died a few times because of stupid arrogant doctors and other social workers. I’m experienced in hospitals and staff. I get it. I was a single mom with no support, I was treated like a leper. Fight for your daughters rights. Never back down. I couldn’t put my son through any more and gave him up for adoption at 2 years. I still see him and he still knows me, he’s 6 1/2 now. I don’t know if in my case fighting would have helped any more or not but you guys have a big chance, go for it.
This is SHOCKING that doctor should be fired and that hospital should be investigated I am writing another post about this.
Let each one of us share this story with everyone we possibly can and it will travel around the world…We need to have this all important discussion about the lack of equality and basic human rights of people with disabilities…Our next civil rights movement needs to focus on firmly establishing equal rights of persons with disabilities…around the world…The time is now!
Prayers for you and your family. If there is a petition being sent to CHOP, please let me know, I would be more than willing to sign it for you. Your daughter is BEAUTIFUL and deserves to live a long and happy life! Keep fighting!!!
This is horrible!! I truly hope Mayo will help you (see reply from Christy Harding). As a special ed teacher though I don’t doubt it considering what I see in education. I also have had an experience sort of similar after a surgery even though I have only a physical disability, but because I am short and was severly swollen in the face from the surgery, recovery room personnel came out and asked my mother (I was 13 at the time, so over 20yrs ago) how I did in school. When she said I was A student they asked “In special classes?” If my mom hadn’t been there to say no, honors classes, who knows what would have happened. Scary thing, surgery had already been completed, this happened in recovery. Why do these people think they are entitled to play God? I pray that the reply from Christy HArding is valid and that Mayo will help you. You can’t get much more prestigious than Mayo. I hope that another hospital and doctor will help you and that this hospital and group of doctors will be punished. If not on this earth then by the real God. I pray that all hospitals will rethink their policies and remind their doctors that they have no authority to decide who lives or dies. I work with these beautiful children and no one has a better quality of life then they do. Everyday they are happy and energetic and live life to the fullest. Can we say that we are able to do that EVERY day?!! No way!! Bless you both and your daughter. Stay strong!!!
Go to Danville, WEIS Children’s Hospital run by Geisinger.
Our son had heart surgery there at 15 days old and we could not have been better taken care of.
I’ve always had issues with CHOP – ever since a company I worked for designed a program to monitor medications and blood flow in children.
I just called CHOP’s ethic’s compliance hotline and made a report. Their number is 866-246-7456. Please call if you are outraged. Of course this family can try other hospitals, but NO hospital should be allowed to make this decision for a family!
Two important things…..First, a study (released July ’11) regarding the success of transplants in persons with Mental Retardation. This should persuade the transplant team that you have a strong case to make to the ethics committee. http://www.docstoc.com/docs/83336849/Organ-transplantation-organ-donation-and-mental-retardation
Second….after this experience you should go somewhere else. While you may not want to give these jerks the satisfaction, it is probably in your daughters best interest to go somewhere that welcomes you. The study I reference above indicates that “six centers” were involved in the sutdy…meaning there are at least six transplant hospitals out there who will do transplants when the person is mentally retarded. I would find out who those six centers are. My sister had her transplant at the University of Alabama which is a world leader in kidney transplants and in transplant research. My sister received great benefit from being at UAB for example she was included in a study for a new one time medication that kept her off some of the other life long meds. UAB is also known to be much more equitable in who they accept as “good candidate” for transplant.
Cut your losses….forget CHOPS as “the right place for your daughter” and deal with them later with legal and ethical charges….but get your daughter somewhere where your entire family is welcomed.
Prayers and best to your little girl and your entire family.
This is insane. Especially since (provided there is a match) a family member is donating. Exclusion from the list is bad enough, but if she is healthy enough for surgery, she should not be denied surgery. I am mostly posting here b/c I forgot something in my Facebook comment…they (the transplant doctors) point out the donor kidney will last about 12 years, and then she’ll need a new one. By then, she may be able to get a bioidentical kidney that her body wouldn’t reject, so she would no longer need the medications or a new kidney again when she’s 30. Scientists have grown a woman in Spain a bioidentical bronchial tube (or similar) and saved her lung in the process (since the lung was only dying due to a bad tube). Other scientists have washed the cells out of the intracellular matrix of a pig heart and grew a human heart on the intracellular matrix. New technology is going to make future transplant organs things that are grown in the lab. No organ rejection, no waiting for a donor, no anti-immune drugs. Even though the technology is here for certain body parts, I don’t think they have done a kidney yet, and even if they have, you probably could not get health insurance to pay for it (though that doesn’t matter when it’s your kid’s life, if you can possibly finance it somehow). A year would be enough time to grow it, probably, but I am not sure about 6 months. I am also unsure, with Amelia’s chromosome issue, that bioidentical is the way to go, since kidney problems are common with her condition, but perhaps a little gene therapy applied to the kidney at the get-go would make it last and still avoid organ rejection (I am just not sure what’s wrong with her kidneys so I can’t speculate further). I just want to give you some hope that, after this is all over, next time will be much better, and next time could land her with a permanently healthy kidney or two. Here’s hoping one of these fine medical establishments recommended here will agree to do the surgery and that one of your family members will be a perfect match. (My fiance and I are both Autistic, and one of his perseverations is bioidentical transplants. I am not a medical professional and neither is he, I just know these things b/c he talks about them and sends me articles to read.)
ATTN: Amelia’s Mom…there is a registry of doctors who have performed transplants for individuals with “MR” and a study supporting the practice. For details and contact information go here. http://researchnews.osu.edu/archive/orgtrans.htm
Please see my previous post as well.
What I want to know is, who runs this hospital? Who owns it? Who regulates it? Who can we write to in order to express outrage at this? Who can we tell, “I will not buy your products, or seek health care at your facilities as long as this ‘Doctor’ (a term I use loosely here) is employed there, and for as long as you continue to discriminate against developmentally delayed Americans?” Also, to whom can we say, “This kind of behavior should be reviewed by the regulatory body, $X” and what is the value of $X here?
I’m still in shock after reading this… unimaginable! Have you talked to the folks at St Jude’s Children’s Hospital in Memphis, TN? They are heroes to many and could possibly be yours!
I can understand your plight, this is your child we are speaking of. However, the doctor and the ethics team is correct in their decision. You can’t fault them for this decision and to attempt to smear CHOP based on your experience with 1 doctor (BTW, I detect some veiled racism in the way you refer to him) is irresponsible. Good luck in your search for a hospital that will help you.
A friend shared your amazingly well-written and truly disturbing blog post on Facebook, and I feel compelled to say how angry this story made me – at that unbelievably cold doctor, at that unhelpful to the point of obstructionist social worker (gee, nice work, lady!), at the whole damn system, medical and beyond. That physician, to be able to look the parents of a very sick child in the eyes and tell them, as if it’s the most natural and obvious thing in the world, that their child literally doesn’t have the same value as other people’s children and thus prime facie ISN’T WORTH EVEN ATTEMPTING TO TREAT? And to even apply the word “ethics” to that kind of sick, deranged moral calculus, much less the idea that a committee meant to make ETHICAL decisions would just blithely declare a child not worthy of life because of a disability, mental or otherwise, when that child’s family is vocally desperate to save her… It’s disgusting, and it should be criminal. God willing that Amelia gets the medical care she deserves, just like EVERY human being ought to… I’m both terribly sorry you went through this and incredibly moved and impressed by your passion to fight for your sweet little girl.
I might use this very topic for my research as I am studying to be a nurse practitioner. In the mean time, keep fighting. You might want to check with Joni Erickson Tada’s organization and see what they recommend. http://www.joniandfriends.org/jonis-corner/jonis-bio/ Best Wishes.
Contact the American Kidney Foundation. They do a great deal of work around patient rights. Also University of Alabama is an elite world leader in kidney transplant and research and they are much less rigid in qualifying patients as “good candidates” My sister had a wonderful experience there as was included in a study that ultimately led to her being on few life long meds than had been historically required. Forget CHOPS…sue them and file ethics charges later. Right now find a hospital who will welcome your entire family. Here’s a link for a registry of hospitals who will perform transplants on patients with MR along with study info proving the equal success in perfomring transplants for people with MR. http://researchnews.osu.edu/archive/orgtrans.htm
I am so sorry this happened to you and your family!
Please please please report this social worker – to any and all agencies who will listen!! This is not the way to counsel families! She makes all of us in the counseling profession look ridiculous. She should be forced to learn how to properly support patients!
You can send the state licensing board an email here: ST-SOCIALWORK@pa.gov
It’s possible that you have a legal case under UN Human Rights Legislation. I think it is worth consulting a lawyer, specifically because the medics definition of ‘quality of life’ is not founded on health reasons but reasons of her intellect. They are discriminating against her because she is different, and they see that difference as unworthy.
http://www.youtube.com/watch?v=oh3BbLk5UIQ
Sorry for this happening. As an RN, I am appalled at those present at your consoling table. Take this not only to the hospital (after you find an institution who will rightfully do this), but also to the organ transplant organizations who create these lists or criterion’s. If this child had a cut requiring stitches and possibly antibiotics, would this also be denied? Passive neglect is still neglect. Such a slippery slope we have found ourselves in. This is dangerous and wrong, for the whole of our society. Good luck
And this is how it began in Nazi Germany in the early 1930s. The mentally retarded were killed first.
This is horrible and beyond belief what gives anyone the right to decide if a person can live or die who is mentally retarded if sickens me to read this. How dare this man who was supposed to have become a doctor to help humanity decide this.This hospital needs to look long and hard at their teams poilcies. I have a granddaughter who is autistic and i thank god every day for her if she were to develop other problems i would never take to this hospital. Do not give up keep on trying to get her to a doctor who actually cares. I am going to post this on my facebook page and try to sprea the word. God bless you
This is the most disgraceful thing I have ever heard. Our daughter Brianna (whom we adopted) was laid aside at birth (23weeks gestation) because she was not expected to survive and birthmother needed immediate care. Brianna let out a cry and struggled to breathe and the team went into action. This was in Fredricksburg VA – not even at a “top” hospital. And, yes, doctors told the nurses not to prepare too much because this wasn’t happening.
Tears of anger and outrage are flowing down my face. These docs are not worthy of your beautiful daughter. I have felt the same way about some of our docs and just simply changed practices until I found someone who would listen. I would LOVE to do anything to help your sweet family. I fully back your “dragon-mom” stance as that is so essential for our kids, unfortunately. We are somewhat near Childrens in DC. I don’t know what they would do any differently, but we have lots of surgeons who know us and Brianna has had a dozen surgeries in 2 years. No transplants though. If they would do it we would love to have you stay at our house, we have plenty of room for visitors. And we have tons (100s)of supporters who would sign any petition in a heartbeat, so please let us know. Keep fighting.
Blessings, to you and your family.
Amy Andrews
I have read your story and all the comments. I agree with many, this is UNACCEPTABLE. How can “we” be free with others judging life for us and our family. What gives them the right to take away out ability to make our own choices? I pray you will find answers and those who WILL help you in this quest. The picture of your little girl is so precious, and she is BEAUTIFUL. Many many years ago I got pregnancy, very young and not a good choice of course. In order to live back in my home (with no other choice than be locked up) they wanted me to abort the baby. NO WAY, I fulfilled the pregnancy and with my choice gave to to someone who wanted a child and chould provide for her where I could not. What if I did not have that choice? Our country should not take away our freedome of our choices and freedome. Prayers and blessings on its way.
You can let Dr. Baluarte know what you think of his decision: baluarte@email.chop.edu!
This is not unusual in the world of transplant medicine. Last year a single mom in Philly was denied a kidney transplant. She had advocated for herself and found a living donor. Albert Einstein Medical Center said that wasn’t fair although they put Dolly Carew and Her donor through 7 months of testing; they were a match; then the hospital denied to tranplant Dolly who has 12 year old girl!
A complete embarrassment to our present day medical society. The doctor and social worker need to be called out on their options because they are WRONG!! Take her somewhere else for care—try Boston and then report all of the medical staff who have into this main stream position. I have been blessed to know and work with many people with mental retardation and any one of them equal 100 of these people with such stupid, ignorant ideas. Your daughter is blessed with you both as parents.
You should go to Change.org and start a petition. I will sign it and I am sure tons of other people will sign it too!!! There have been lots of victories with Change.org! It might be a good place to start. You should also go to the local news stations in Philadelphia and see if you can get them to help you make this public how CHOP discriminates! This is appaling!!
I am severely disturbed by this post. I can not believe that a doctor could be this way. Saying that her life is not ‘worth’ the transplant breaks my damn heart. I am angered and saddened and hurt all in one. I have shared on my facebook page and I have shared on my mothers site as well. UGH! I am soooo angered!
GO TO THE MEDIA! If there is anything that hospitals are sensitive and responsive to, it is bad publicity. If you have to take her somewhere else to have the surgery done, so be it. Are these really the people that you want to entrust with your daughter’s life? Some where there, there are doctors with a reverence and respect for all people. Let them help. But meanwhile, you have an obligation to let others know exactly what type of people are working at that facility.
I am horrified at this. My heart is broken surely God can help us find an answer for this. We need a lot of people praying for Amelia and find out what action can be taken. Horrified just horrified. SharonC
I am praying for your family. It is terrible the way you are being treated. Susan Barnett from Channel 3 news is interested in your story. She would like to speak with you if you are interested. Her e-mail address is barnett@cbs3.com
I agree!! Take this to the Phila Inquirer and Channel 6 ABC news! Spread the word. This is abhorent behavior that borders on inhumane.
I don’t know you, but about halfway through your story I was ready to rip my own kidney out and mail it in a cooler to your little girl. This is not right. As a matter of fact, it’s disgusting.
I am praying for you and your family that you find a doctor who sees your daughter for what she is — a precious child of God who deserves the best life possible. I’m also going to pray for every other developmentally delayed child that has to encounter these #$2hole doctors on a daily basis.
And that a doctor would tell a patient he’s been “warned” about her because she advocates for her child’s well-being. I hope something is lost in translation there; and if not, well I hope something else that isn’t polite enough to say in mixed company.
There’s another man in history who thought that people should be sentenced to death because they were inferior.
His name was Hitler.
You can subscribe to Mia’s updates here: http://wolfhirschhorn.us4.list-manage.com/subscribe?u=e5c154ae84117c31d09f67720&id=4e852fdd91.
That is unacceptable! I am deaf so I know discrimination when I see it!
This Dr has no right to make this decision. AND for him to use the term “mentally retarded” appalls me!!!
Who in the world has the right to say that because someone is diffrent from them that they have no right to live a life? Who determines what a good quality of life is for anyone else? Someone else said that there was a person once who tried to decide who should live and who shouldn’t and that person’s name was Adolf Hitler- and they are absolulety correct. What in the heck does this dr. mean when he says that he was “warned” about you because of your advocation for your child? I advocate for my family and have gone toe to toe and fought tooth and nail for my children and my spouse when the needs have arisen. I think that instead of ridiculing you all for your passion and care for your child that they should be giving you a trophy in this world where so many people don’t take care of their children. My daughter has recently been diagnosed with epilpesy- because she has epilipesy should she be treated with less care then someone’s child who doesn’t? Should she be denied because of a medical difference in her brain then someone who doesn’t have that? Absolutley not. And let someone tell me that they won’t treat her because of her epilpesy. I think you should take this to court and sue them for discrimination and defemation of character.
I agree, go to the media. They will being attention to it. My sister is a reporter in San Francisco and covers stories like this. Best of luck to you and your beautiful little girl.
What can we do to help? I have a bunch of pissed Moms (some of them special needs parents like myself) who want to help. Lord knows how much a bunch of pissed off Moms can do. Tell us what we can do.
Funny. Follow and spread the word. Change is needed and there is power in numbers. Thank you!
I am so sorry your daughter was treated so callously. How dare they?
I am in tears reading your story. My nephew has Downs Syndrome, and yet he is a wonderful 16 year old kid who teaches us all about the joy of life. When he was a toddler, he had to have corrective surgery for the holes in his heart that he was born with, and I can’t imagine doctors telling my sister he didn’t deserve the surgery. I think contacting the media is the best thing you could do-a friend of mine got her husband’s military disability benefits after he was shot in the head in Afghanistan and the military refused to pay for it! She went to the media everywhere, and eventually won. I wish you the best of luck, and don’t give up!
My daughter Ana had Hepatitis B up until she cleared the virus at age 13. Back when her viral particles were still off the medical charts a doctor here in Grand Rapids, MI, told us she would not be eligible for a liver transplant because of her limb differences. (Ana was born without legs and with shortened arms.) He also spoke of poor quality of life. We took her to a pediatric endocrinologist in Ann Arbor who would consider her for a transplant. Thank the Lord it does not appear that she will need that transplant, but shame on those doctors playing god, thinking they can determine which lives are worth living. Today, at the age of 15 Ana has begun her motivational speaking career and inspires people everywhere she goes. She is such a joy and has blessed so many. Here is a youtube video of her for your encouragement: http://www.youtube.com/watch?v=hOJEGoFgeQU
I let Dr. Baluarte know just what I think about his actions. I encourage others to do the same.
baluarte@email.chop.edu
Dr. Baluarte,
I want you to know that I am APPALLED at your decision to deny a life saving transplant to a beautiful little girl, with a family who loves her, based on nothing more than the fact that she is mentally handicapped. You are not God, although I have do doubt you believe you are his equal. Who are you to decide that this little girl’s life is less valuable than any other child’s life? God values this little girl’s life. Would you perform the transplant if she were your daughter or your grand daughter? Of course you would, because then you would be close enough to a child with mental delays to know that their lives are happy, fulfilling, and enriching to those around them. You should be ashamed of yourself.
Megan Wright – a complete stranger to this family, a complete stranger that understands basic human ethics.
This is sad…how dear they say no cause of handicap…i would be royally Peed off…You sve my daughter any any child for that matter…Fight as parents…post…media papers…whoever will listen…Im not rich but i would be damn if they would tell me they ain’t gonna save my kid…Get this done for Amelia, she looks as golden as any child…There are great people out there would help you..Plus you say you have a family that stands behind you..that is awesome…Love your daughter forever and fight for her…SHe is not big enough to do it herself…This is why God makes us Parents to fight for our kids…God bless ur family and i hope you the best…
Hi, I just stumbled upon this and to be honest i was initially lost for words and now i am finding so many but too many expeltives… I cannot believe your beautiful precious daughter is being treated like this… are we really in a time when life is dispensable when one person decides its quality is not what they consider to be good enough… who the hell has a right to make that decision.?? Are we going to move on to anyone who isnt in peak condition is not viable and happy or stable enough to have it done… Hey maybe they might go on colour of hair next or looks… I am appalled and so upset for you and your family and i cannot apologise enough for the lack of care some of us human beings seem to show, all in the name of the Greed and power… I so hope you can find someone WITH A SOUL who will help you to get a transplant and i would really like the address of this hospital to let them know what i think…With regards and much sorrow.. sarah x uk
I am a mom of 3 special needs kids and i swore by CHOP until now. I have no words to describe my pure disgust for this hospital that I once would trust them with my chidlrens life and have. I am so enraged i want to get in my car and drive from NYC area to philly and cause a scene until they say yes. where are all the protest for this baby girl? where is gloria allred al sharpten rev. james? where are the press conferences by the local politicians? i would call all of them, tell drudge online website, call every single media outlet known to man to get this story out there. raising a special needs child is not easy, parents need to join together especially the special needs parents and help this family. this could be any one of our children.
I’m so sorry about this. I would suggest that you report the social worker and doctor, because even if they think that your daughter isn’t eligible, they shouldn’t be talking to you like that. I can see maybe if they had another medical reason not to have the transplant, but I still think that she has the right to live. This is awful.
Rebekah is absolutely right – go to Change.org and start a petition – they have had some amazing results – and often the media really runs with some of their petitions. And bring it to the media – and keep bringing it. I am absolutely horrified that happened to you and your precious little one.
No only should we let this so-called physician know how we feel, but we should also let the CHOP administration know as well. This is a travesty!
I think this is just wrong for any one to be turned away like this, to my it shouldnt matter whats wrong with them. but now days dr.s think they have the right to pick and choose who,what,when,where and how they want things done, they really dont care who they hurt..
My daughter Laura was born in 1985 with the same syndrome – and I actually took Medicare to court to fight their decision NOT to provide proper care for her – we lost since the judge sided against us stating Laura’s life expectancy basically was not worth the cost or investment…..such a tragedy.
I feel for you & your daughter. This is so very unfair.
Thank you for sharing your story. It is absolutely horrible, and WRONG! Your daughter is beautiful, and she is lucky to have such a strong mother like you. FIGHT FIGHT FIGHT!!!
After reading this story, I didn’t know whether I should cry or throw something in anger. I was so appalled at the idea that a DOCTOR would have the gall to say such things to you. How DARE he say that your daughter doesn’t have the right to a transplant because she is mentally challenged. What has that got to do with anything? She is STILL a human being and has as much a right to live a good life as he does.Because she doesn’t act the way he does doesn’t mean that she can’t have a good quality life. The quality of anyone’s life is what we each decide is good quality, not what someone else decides is of good quality.If your daughter is happy in her life, and I am sure that with you as parents she is, then she has a good quality of life. (I would dare to bet you that the doctor himself has a very stressful life, and what kind of quality of life is that? ) What gives HIM the right to decide whether she will have a good quality life or not?
For him to say that he was WARNED about you??? What exactly is that supposed to mean? That you are GOOD parents? That you care and are good advocates for your child? That you will fight for what your daughter deserves? That you will defend her rights at all cost? Then GOOD FOR YOU! Let him be warned. He hasn’t seen the end of it yet.He needs to be taken to court for what he has done. He has discriminated against your daughter and that alone is illegal. He has defamed her and that too is illegal. To bring the whole hospital board into it, I wonder if they were to receive a court order, how they would support his statement. I would dare to bet that he would probably find himself without a job mighty fast because hospitals do not want to lose business over situations like this. If you take this to the NEWS and the COURTS, you will see a very fast change of mind on the part of the board of directors of that hospital. I assure you. I worked in a hospital ER and saw many legal issues cleared up quickly by appeasing the patients rather than going to court or having any kind of bad publicity. I have seen doctors disappear from the hospital staff for the same reason. Please do not hesitate to take this to the public eye FAST!!! God is on your side my dears. Be Blessed. I will be praying for you and your beautiful little girl and a speedy solution to your problem.
Sorry to hear what you are going through, but I am not surprised with CHOP. I was going through them with 2 of my children and they started to pull some crazy stuff with my 8 yr old and my 14 yr old.
I am a big advocate and when I stated that I might go somewhere else and get a second opinion they actually reported me to the state. Of course nothing came from that, but they were just petty.
With regards to my 8 yr old he needed a procedure done, they recommended it, and when they saw he had state MA all of a sudden he doesn’t need it because the doctor at CHOP doesn’t take it. I asked how much and to see about scholarships because supposedly money is raised there to help families but now he didn’t need it. But all the local doctors said he does.
So I pulled him. They just didn’t want to help with a scholarship or waive the fees.
I feel CHOP isn’t what they use to be, I don’t think they care as much, as we see in your case.
Instead of fighting with them, go to another hospital. Hershey, Geisinger. But do get an attorney. I feel they have discriminated against you and your daughter.
This reminds me of the so many years ago when children and adults were locked away because of the disABILITIES! remember the word ABILITIES is in the word disability!
Your daughter has rights who are they to say anything about her quality or life.
I have a rare cancer, so maybe I should be put out to the pasture and shot because in the US there isn’t many treatments. Lets get real! This is 2012, not 1800’s. There are many organizations out there also, find them and get some advocates on your side, but think if you really would want this hospital and these doctors, and this social worker working with your family and your daughter in the future, they don’t seem to care, so will they really work for her best of care.
I pulled both my children out of CHOP because after what they did I felt I could not trust the doctors or the social worker that I confided in because the information I confided in her went straight to the doctor.
Remember you need to advocate!
Good luck
Lori
This saddens my heart as a nurse but more than that I a mama bear! I think that you have a whole passel of mama bears that will fight with you. There is strength in numbers. We have physicians that go to 3rd world countries or we bring the children here (Not against this at all) we send then back knowing the statistics for their surrvivals in those countires but we still do it. That physician may have a degree he has no heart. There IS a Dr out there that will do this and my guess is you spend every waking moment looking for him. Your daughter is beautiful and NO ONE should assume what her wuality of life is. She is who she is, and she does what she knows and I am certain she ia a happy little girl. Does he have quality of life when he can make such a decision?
It sickens me that they are playing GOD,, and deciding what this little girls fait is, so what if she has this problem, Im around people with down syndrome, and mental retardation on saturdays at bowling,and some of them bowled when i bowled as a teenager over 10 years ago and they still know who Iam so that tells me they do know whats going and even tho they have these problems they still have a heart, the sweetest people you will ever meet, so whos to say they can say if she gets a transplant or not,, Im so sorry this is happing to this sweet baby… Shes in my prayers that everything will work out..
What is the email for the medical board? This doctor and the social worker need to lose their licenses. If THEIR child had a developmental delay, they would have the transplant. What a disgrace. Can you please publish the social worker’s email, as well as her supervisor? What about the school the social worker went to? This school needs to know what pathetic individuals theie social worker graduates are.
I am appalled to hear you story. I wish I had some advice to offer you, and I do not know what I can do to help you. I posted your story on my facebook to spread the word. This is a terrible and horrible practice, and it needs to be stopped. This is completely unacceptable, but I don’t know what to do about it. If anybody does, then please let me know.
I’ve sent a message to CHOP’s Public Relations concerning the matter; consider them educated. They have no right to make medical decisions for the parents, and have no business determining an individual’s quality of life. Every day surgeons perform operations to patients who voluntarily have a lesser quality of life because of their lifestyles, and every day, families choose to have a loved one survive on machines and feeding tubes alone. I suppose they do have authority to make criteria for the waiting list, but to refuse when the family offers a donor?! Good luck in your fight, and I’ll be praying for you, your family, and especially Amelia. I only hope more contact the hospital and let them know the error of their ways.
This is a very sad story. Obama care at its best. I have one question; did anyone at the hospital or on the approval board consider the QUALITY OF LIFE issues for the parents when their beautiful daughter passes? We can fight this and we should do something about this it.
OMGosh! I am LIVID! I feel like driving to CHOP from the west coast and kicking some serious ASS!! This kind of CRAP has got to stop! My God-Daughter was born missing the artery from her heart to her lung. If this had happened to her, she would not be a here today! She’s 16 months old now, and tho she’s a little small due also to being a preemie, she is AWESOME! She has endured 3 MAJOR surgeries so far, and still has a feeding tube (she has never eaten any other way), and she has MANY surgeries to go as she grows. They had to build her an artery, which will have to be built bigger as she gets older. Her parents had to take her to LA, Calif. to the University hospital there, since there are only 2 places in the world that could do this for her. …Isn’t Philly the city of ‘Brotherly Love’?? If that is the case, these assholes need to be driven OUT!!!! I would love to help this family spread the word ALL over from my end of the USA… I just am not sure how they can contact me, but I am on Facebook in Idaho…. Many Prayers are flowing to them, ALWAYS! There IS power in Prayer, as I have seen it with my OWN eyes!!
I hate that this happened to you. We had a similarly horrific experience at CHOP as well. I was 23 weeks pregnant when we went to their Fetal Diagnosis Center. After 13 hours of tests they led us into a small room with 8 chairs and a box of tissues. Six doctors bombarded us with info – I was carrying triplets, one deceased, one with a brain malformation and one with a heart defect. After explaining in soul crushing detail, they told me they all had a chromosomal defect and they would all die at or before childbirth. One doctor looked at me and said “You’re young. You should scrap this one and start over.” and handed me a card with info to schedule ‘an evacuation’. An abortion. Those doctors told me to abort my babies, but I had to do it within the week b/c no one in my state would do them in the 3rd trimester. 23 weeks and 6 days would be fine, but 24 was where they drew the line. They told me to call as soon as I got home to make sure I could get in in time. I didn’t. I carried my all of my babies. One died one week after birth, and we just celebrated my daughter’s 3rd birthday. I got to keep one, but if I had listened to those dr’s I would have lost her. They were wrong – and I’m scared to think of the number of families that believe them and follow their recomendations. Stay strong and fight for your baby!
I am sure we are all outraged. The question is what can we do. This must be a solvable problem.
I find this incredibly appalling. I am a nurse and my husband a physician. He’s also the Chairman of a hospital ethics committee. He was stunned and couldn’t believe a physician would do this and a hospital back his position. (Really, think of all the bad press you could give them). I’m giving you a list of hospitals that are experts in pediatric transplants. You need to focus on the care of your child and forget this small minded group of self-important,egotistic, pretentious jerks. I hope you can find the care you need for your wonderful child.
Miami Childrens Hospital: Coral Gables, Fl
Vanderbilt University Medical Center Pediatric Hospital: Nashville, TN
Shriners Hospitals: Many nationwide
University of California Davis, Davis, CA (outside of Sacramento)
Good luck to your family. Not all medical people believe they have the right to pass judgement/play God with people’s lives. We are here to help I’m sorry you have gone through this and in behalf of the rest of the medical profession with a real code of ethics I wish you the best.
As a doctor, that man took an oath, one that he can clearly not uphold. As a parent, you brought a life into this world, and you are serving that life with every ounce of your being.
What happened to you, may just have changed the world because you care enough to share your story.
May God be with you on your journey!
How the hell can they justify that! Abortion is an issue bc everyone has the right to life. Euthenasia is unacceptable when people are on death row. So where do they get off saying that someone who can be saved can’t. BS its that murder. Don’t doctors take an oath to do no harm. Especially that your family would be donating. There are people who got Hep C from drinking & get to receive a transplant. Keep going & going until you save your daughter, & you will. You will be laying the groundwork to put a stop to this insensitive insanity.
There is not much I can do, but I have been spreading the word, I hope this will be made right, because as it is, it’s reprehensible.
This is absolutley ridiculous! Who do they think they are to be able to judge the value of a life? Who are they to say that one life is more valuable than another. You’ve got my inner mama bear all fired up now. Fight for your girl and fight for all others like her. Good for you.
what a beautiful little girl! I hope they reverse their decision!!!! Hospitals will spend millions on premature babies and it is a gamble every time on what the quality of their lives will be and that doesn’t matter…. Your daughter is here and needs help now, what can we do to help your family?
I am so sorry for what you were told and what you are going through. I also have a child with special needs and I know we hit a lot of “brick walls” but this one is especially troubling.
I cannot believe the audacity of people sometimes, I think they just get hardened at seeing so much sadness so they have no ability to really understand our children, to love them or even to see their worth to us, the community and the world. I have several clients with intellectual disabilities that give so much to this world, I can’t imagine never meeting them and having them impact my life. I am just appauled at the implication that she is any less capable of living a happy life than the rest of us. In fact, she may be way MORE capable to live a beautiful, wonderful life than any of us. Who are doctors to tell you your child is less deserving than any other child because of her concurrent diagnosis.
Doctors have been “warned” about us too. If you don’t piss anybody off now and then being the parent of a special needs child, then you aren’t doing it right. Keep fighting for your child. I know it gets tiring but keep up the fight for her.
One idea, we used this to an ethics committee before as well as for his IEP every year to ensure that everyone understands that he is a human being deserving of rights and ensures they see his contributions to society. DO a short video 2-3 minutes of everything from birth to now, (with pictures and music) include milestones, things she has overcome and any kind of social or community ties (is she in aplaygroup, belong to a church, what activities does she enjoy with your family?), include quotes about persons deserving equal rights, quotes about the worth of a person and how that is measured, include quotes if you can from others regarding your daughter and what they love about her etc. The things you need to say will come to you.
Make them watch this before coming to a decision. (Bring a laptop computer to play this video on so they can’t say that there is a “technical difficulty” where you cannot show the video.) If you are comfortable enough, post it on youtube! Your story is getting national attention, I would guess the Children’s Hospital of Philadephia doesn’t want 1 million hits on a video that tells this story and shows the worth of your beautiful child.
I hope something gives and your daughter gets what she needs soon. <3 to her and your family.
I have a severely disables little brother named Luke. My family and I love him more than anyone, or thing, in the world. We have been blessed to have Luke in our lives for 12 years now. We would do anything at all for him. When Luke was born, a doctor at CHOP told us to, “Let nature take its course.” She also told us to not medicate his seizures. We, of course, did not listen to this complete nut-job of a doctor. I will pray for your family and for Amelia’s healing. God has showed the doctors at CHOP how wrong they were about Luke, time and time again. I pray he shows the doctors the same about Amelia. Please look into another hospital doing the transplant, and I would give Amelia a kidney, if we match.
God Bless,
Adam
As the mother of a special needs child, this is beyond reprehensible! How dare the medical community play God and decide whose life is worth saving or not based on what they think is an acceptable quality of life? Our kids want to live just as much as non-disabled people do. They are not the ones who think their quality of life is inferior to “typical” people. They are happy just the way God made them. It’s an abomination that these doctors are so “educated” about biology that they don’t see the human element in all this. It’s too bad that in the year 2012 this form of discrimination is still tolerated.
You should contact Pennsylvania’s Protection and Advocacy Group IMMEDIATELY. Every state has a federally-mandated organization in charge of protecting the rights of persons with disabilities. They have a team of attorneys who are hired to protect the interests of your child when those who are in charge of her medical care will not. I have attached the link to your state’s organization below. Good luck! http://drnpa.org/
ARE THEY ABSOLUTELY OUT OF THEIR MINDS? THIS LITTLE GIRL IS ALIVE. DOCTORS ARE OBLIGATED TO TREAT HER AND TRY TO MAKE HER QUALITY OF LIFE BETTER. IT IS DISCRIMINATING AGAINST HER. I CAN SEE HER BEAUTIFUL SMILE. THIS HOSPITAL IS VIOLATING HER RIGHTS TO LIVE.
I would like to be tested as a possible donor.
A word to the “wise”: Please read Matt 25:31-46, The Last Judgment.
Isn’t it interesting that we read of this as we approach the 39th anniversary of Roe v. Wade on Jan. 22! Moreover, who could look Amelia in the eye and tell her this? If she could read, would her doctors hide newspapers from her?
I personally will show this to anyone who will listen.she has as much a right to live as any child disability should not even be considered how do these people sleep at night?
Who are they to decide what quality of life is! Keep fighting for your beautiful baby! She has as much right to live as anybody! God is the only one who decides when we live or die, no one else!
That’s probably the same kind of doctor who would gladly put a new liver in an alcoholic just to get them back in shape to go to the bar.
Very sad story, my prayers to Amelia and family.
I COMPLETELY understand you! My daughter has lots of diagnosises, one of which is multiple heart conditions. Because of them, she has had a stroke. She’s not at the point where she needs it, but we asked the question what if the time comes and there is not another surgery, when would we consider the heart transplant… They said because of the brain damage from the stroke , she “probably would not be eligible”…. Hardest thing to hear… But they also said she might never open her eyes again, and guess what? Her eyes are a beautiful coffee color that shines bright when she smiles!!! Fight for your girl!
I just read your story and I too was going to tellabout the attorneys and advocate groups that there are available. Advocates are the best way to go plus the link Jill posted for you I can only brg you to try the people I for a favt know people with specials needs children and work in that field adxocates are the way to go…plus I hate to say this but I would SELL MY SOUL for my child if you can’t get any help this way go public go to all your newd channels actually a veteran report in Pgh at channel 4 wtae Kelly Fry has a child that was born and only projected to live 2 month she could be your best mouth piece http://www.thepittsburghchannel.com I know she would try and help you I am going to email yhis to her I hopre this helps
I also want to know how we can help. My two younger sisters have special needs and I would literally die or go to prison before I let a doctor decide whether they lived based on their intellect. SHAME on them, fortunately, karma will find them. Meanwhile, find another hospital. Surely there is another facility that would take better care of your precious child. And I agree that you should pursue legal action and media coverage. If money is the issue, you can see the outpouring of support already. Love and blessings on you and your family, we all love and support you even though we do not know you.
How disgustingly appalling!!! I totally appreciate you live in the USA, however have you considered looking to Canada for the surgery? Here in Edmonton, Alberta Canada we have an amazing children’s hospital. I’m sure you could successfully appeal here for help. I see cases quite frequently on EdmontonSun.com about children from all over North America coming to the Stollery Children’s Hospital for surgeries.
http://www.stollerykids.com/
Stay strong, keep fighting and just so you know your story was shared on a link for the Dr. Phil Show. Fingers crossed, maybe it will help.
God Bless.
That is the most disgusting thing I have ever heard! Call your local news station, the paper, don’t let those people get away with this!
It’s already all over the news!
I too have a special needs child with serious genetically inherited mtDNA health issues that are progressive.
We have been helped enormously by the CDRC Metabolic Clinic at OHSU in Portland Oregon.
I do not know if they would be able to help your daughter but it is worth a call to them or a look at their website. The link below is for the nephrology clinic at Doernbecher Children’s Hospital.
http://www.ohsu.edu/xd/health/services/doernbecher/programs-services/nephrology.cfm
This second link is for the metabolic clinic.
http://www.ohsu.edu/cdrc/clinical/portland/metabolic.html
Good luck to you with finding help for your beautiful daughter.
Reading your story actually makes me a little sick. I am so sorry for you and your family! Your daughter is beautiful and deserves the same rights that any other child would have. I must be honest that I do not know that much when it comes to transplants but if the United States will not help you then try Canada! Your daughter deserves a life and nobody should be able to take that away from her. I wish the best for your family and will be praying for things to come through for you!
I have shared this and encouraged others to do the same. You need all the support you can possibly get, and this is the only way I know how to help.
The moment that infuriated me, as a parent of a child who had many medical needs at one point, was when he said that he’d been warned of you being informed and involved. WTF?!? Since when is that a bad thing?!?!
Fight, Mama, fight!!
This is very disturbing…that Amelia does not qualify for a transplant because of her mental status…
I am so infuriated by this post I’m actually shaking. EVERY child has the right to live, regardless. Plus, you said you’re finding your own donor… so really, there’s ABSOLUTELY no reason. None.
We live 30 minutes from Texas Children’s in Houston. You are absolutely free to come stay as long as you need to.
Andrea
My jaw is on the floor. What world do we live in?? I will add my voice to this story, and spread the word. I will also be keeping your family in my thoughts. You have a beautiful little girl!! Your strength is astounding. God chose the right mom for Amelia, that’s for sure.
Maybe it would help to contact the hospital’s biggest donors and see if they could put pressure on the hospital by withholding donations and encouraging other big donors to do the same until the doctors come to their senses.
Thank you for raising awareness on this issue. This is a beautiful website too.
I live in a country that has socialized medicine. I had a child who has a condition that is somewhat similar to that of Amelia. In my country, there is very little litigation and certainly none for the death of a disabled child with an uncertain life span as they are worthless in the legal system.
The only hope such a child has is if parents become aware that they will likely be denied care on the basis of disability, such as Amelia’s parent learned. Once the parents learn the truth, they can launch a media or court challenge and would likely be successful in obtaining treatment. However, the consequence of this ability is that a culture of covert withholding of appropriate care is developed. What happens is that doctors never overtly deny treatment and certainly do not respond as truthfully as Amelia’s doctor. Instead, they agree to all of the families wishes. They nod and smile but in the meantime, they have their own plans. Parents are told “we are watching it and taking a conservative approach.” Meantime, the child’s condition is worsening to the point where it is too late to help them.
I would encourage the parents of all special needs kids to learn the lessons that we have learned the hard way.
1. If your child has cognitive delays, never trust that the doctor will take any actions to save their life.
2. Make the assumption that the doctor believes your child, your family and society is better off if your child is dead. This belief requires challenging everything about your child’s care. Ask other parents what their doctors did under similar circumstances for children with no disabilities.For example, if symptoms were this and this, what tests did doctors order? Find out what the standard of care is and ensure that your child’s doctor are responding appropriately.
3. Be bold such as Amelia’s parents were and ask if your child is being treated differently on the basis of disability.
4. Depending on the laws of your state, if legal, tape all meetings with physicians.
My heart goes out to you,daughter and your husband. It sounds like the doctor is already following Obama’s “death panels”. This is only the beginning of what is in store for us all- eugenics.
These doctor’s have to remember that they are only g-d’s messengers to cure people. They have no right to decide who can live or die!!
Fight for your sweet little girl!!
I have seen this type of outrageous
behavior from the staff at chop before.
They try to cover up everything
There are do many two faced people who
work there. My family had a problem
with a lying psychologists Tim Power and Steve Sofer.
They talked about us behind our back,
denied any assistance and were bit helpful
at all.
Chop is always trying to cover up
mistakes and they Always blame the
family.
In 1985 God blessed me with an angel born with a heart defect known as HLHS, Hypoplastic Left-heart Syndrome. She wa operated on at CHoP and was doing ok until her 3000mile check-up on her 27th day of life. God took her back! In 1989 I found out I was pregnant again, CHoP did fetal echo monitoring and we found our unborn son to have a different heart defect, Tetrology of Fallot. He too was operated at CHoP and live…for two months till God called him back as well. During my lengthy stays in that hospital I met some great nurses, doctors and parents (and some jerks of doctors too!) but the one thing that I remember and haunts me to this day is how medical care in other countries were like you were treated. Parents with HLHS babies were told to take their babies home and make them comfortable. love them and watch them die! I am appalled that in todays times a doctor in the world reknowned CHoP would be so heartlees, callass and uncaring in a teaching hospital whose mission statement is saving lives of children!I will pray that by getting the word out this will get your message out too that your young child is a person with a heart and soul who deserves to have medical treatment!
I’ve been thinking about your little girl since I came across this blog post on a friend’s facebook page last night. Then I had a thought which I really hope can help – contact FR. FRANK PAVONE of Priests for Life. If you recall a little baby named Joseph from Canada was brought by medi helicopter to a US hospital when the medical system in Canada failed him. Fr. Frank was instrumental in this. His quote here is “If there is a chance this boy can live, we have to explore every option.” Please read the story below:
http://www.medpagetoday.com/PublicHealthPolicy/Ethics/25332
I come here through Single Dad’s web site and, while I do not have a disabled child, I am a parent and I find this reprehensible.
I agree with all of the comments and see so many avenues for you to explore but, from this one post, I sense you will explore a million options until you get the answers and treatment you want and need and that Amelia deserves.
Good luck and positive thoughts come your way….
Carol
Your child certainly deserves to live, and it doesn’t make sense that this hospital would not allow a directed donation. I do understand about the non-directed donation transplant lists, though, because at this time, a kidney is a very scarce resource, but in about a dozen years, with advances in regenerative medicine, we should be able to grow kidneys with our stem cells. They should do the surgery now, give your girl a chance to benefit from future advances in medicine.
Dear Kimberly:
First let me say that my heart breaks for you and your family. My husband and I had similar experiences first with my children before the were born in a hospital in NY and then again with my son, who has severe cerebral palsy, with a hospital in NJ. We were essentially told in medical terms “not to bother”. I think your response of tears was braver than mine: I vaguely remember rocking back and forth in a corner like someone on the verge of a complete breakdown. Although our lives have not been easy, my son is one of the most precious children in the world and I thank God for him!
God Bless you and your family.
(PS We found Neumors Hospital in Delaware to be much more respectful towards life and family that other hospitals)
this is outrageous,who do these so called doctors think they are,your little girl has as much right to a transplant as any other human being,i am utterly disgusted at there behaviour,i wonder if the doctors or social workers child needed the transplant if they would say the same (i dont think so) i would take these morons to court,sending all my love to you and your beautiful little girl and hope you get everything you wish for in the future regards joanne (angel jakeys mommy) xxx<3
What can we do? Is there someone we can call? A petition we can sign? AS this is expected to be a private donation, who has the right to say she can’t have the surgery! What will happen in 30 years is that either someone else will step up to the plate to take care of your daughter, or she will have had 30 more years! I’ll continue to keep checking back to see if you have any action points for those of us who are also outraged on your behalf!
I too am the parent of a medically involved special needs, developmentally delayed child. I have been in fights for years and have had to file against districts for outright abuse. I will pray for your daughter and hope that karma is not too ugly for those in charge of this decision. I love the comment that if we have not made people mad along our way we are not doing it right. If the best worst thing I do in my life is fight for my son and make people upset on the way, oh well…. I will happily take that achievement to my grave. The others have said it all. IF this can happen to her where does it stop? No one has the right to judge quality of life. One life can touch so many. Already your daughter is doing such amazing things in touching all of our lives.
I am a mother of a special needs child. My daughter an had kidney,liver failure andfull respiratory arrest at birth. Everything came back except her kidneys. My daughter is now 15, she had her kidney transplant when she was thirteen. We are in Boston and she had her’s done at MGH. You keep fighting, no one has the right to tell you a child is not worth it! My daughter wouldn’t take a single med by mouth prior to her surgery,and now she is doing it. Our kids are so much stronger than anyone I know
Being a childhood cancer survivor of the 60’s. Having lost a kidney at that time, being now a nurse who works with children in the school system in my area, I am APPALLED I mean sick to my stomach, that this happens in today’s world. I do understand why drug addicts cannot get livers but an innocent child! I Have seen in my experience a child who was born who was not supposed to live to be a year old not only celebrate her 10th birthday but also be in normal ed. classes… I pray that you win this fight for your baby girl and I rejoice that she was born to parents who will not give up.
I am horrified to hear this story and have had personal experience with CHOP and would never expect this of them. The fact that her mental challenges are even weighing on this decision is disgusting. Murders, pedafiles and otherwise horrific human beings get more consideration than this poor little girl. And the doctor is he kidding me to say I heard how you are with her, seriously its their daughter. I guess they think they should give up on her b/c the hospital has. Absolutely digusting. My prayers will be with this family in hopes for a transplant and medical stability for a beautiful child.
This is wrong. It is tantamount to abortion. As we apporach the 39th anniversary of Roe v. Wade we must pray that society comes to its senses. Those opposed to helping Amelia’s dire straits and refuse to approve a transplant should take a look at Matt 25:31-46.
This precious child has the same right to life as any other precious child and any doctor or denies this is nothing but perversion to his profession!
I have a cousin who was diagnosed with Hodgkin s disease many many years ago. The Doctors Refused to give her any “alternative” Medicines Saying it wouldn’t help her. So, they kept her on Chemo for 2 years until it eventually developed in to stage 4 cancer & she then only had hours to left live.
Her Mother seeing the lack of Empathy out of the doctors & the hospital immediately moved her to I believe it was the Atkins Clinic (Where???) where they started treatment on her with “alternative” medications. She was then shipped via train to Canada where she received further treatment that they would not “allow” here in the United States.
That was over 15 years ago, & she is still alive & cancer free. Don’t give up. Find another Hospital. Because all most of these places care about is their profit & liability factor, NOT the patient! God Bless you & Good Luck. – Stu Hannah
I am so sorry to hear of this! It is outrageous that anyone would discriminate against your daughter! I had a little brother with Trisomy 18 that was the joy of our family. He was such a gift to us- a fact that his doctors often failed to grasp.
I’ll be praying for you! God Bless!
Have you tried St. Judes?
I read your story last week and it has been on my mind ever since. I see that many people have commented and I haven’t read what they have to say so I apologize if I am repeating some suggestions/comments.
First of all, either fire your case worker or get them to understand that they work for you…not for the hospital. They should be on your side and work to find a solution.
Second, you should have a local advocacy center contact them and let them raise the an uproar.
Third, contact your local television and newspapers…this is a story that should be heard nationwide and even though it’s spreading on facebook, if national networks hear about this, I am sure they will want to hear your story.
I look forward to hearing that your plight has been resolved due to pressure and outrage from the community and the nation!
God bless.
How horrible and appalling of those doctors to play God! Mom you stand your ground and fight for your angel!!! She has as much right as anyone else to have that transplant!!!! Take it to the Supreme Court if you have to!!!
I found this article on a quick google which is research based and shows good outcomes with family support. I would take this to a higher level and hire a patient advocate if you need to. Sorry you are having to deal with this.
http://nisonger.osu.edu/papers/LWSarticle.pdf
http://www.mnddc.org/news/pdf/transplant_article6-04.pdf
I have been spreading the word in every way I can, I have signed the Change.org petition, requested updates via email, and I’m praying…… I’m sure you have already considered this, but Shriner’s Hospital is another amazing hospital, in addition to others like St. Jude. I agree you need to fight this, this doctor is playing God, however, I also see that you have precious time with your daughter and see who else is willing to evaluate her. God bless your family….
Start a petition for Amelia on change.org that can be presented to the ethics committee. Call your local news station to shine a light on your story and the cruelty of the doctors and the hospital. There is strength in numbers and in the court of public opinion they will most assuredly lose. Good luck and God Bless!
I will definitely be praying for Amelia and your family and for doctors who will stop this nonsense and treat all patients equally. Please read this blog post I wrote about Amelia’s story and the overall culture of death in our society.
http://nicolemueller.wordpress.com/2012/01/17/do-retarded-children-deserve-to-live/
I am so saddened to hear about this travesty. I have had a similar experience myself. My daughter was born at Johns Hopkins Hospital in MD on December 1,2004 with MIDAS syndrome and HLHS. When she was 2 days old we were brought into a room with a social worker, nurses and doctors and were told that because they believed our daughter had “no quality of life” and would probably never walk or talk they felt it was pointless and a waste of resources to do heart surgery on our daughter. They said that even with surgery she would probably just die by the age of 10 anyway and it would be better to lose her now than 10 years from now. I was devastated. I couldn’t believe what I was hearing. One of the doctors actually said that it was an interesting case but not worth his time considering that she would never be a “productive member of society”. We were told that we could try to find another hospital to do the surgery but that they would recommend to any other hospital against it. Sadly our daughter passed away on December 5, 2004 without receiving the life saving surgery she needed. What really made things worse for me was when I came across a case study on the internet a couple of years ago that was done on my child-including pictures-(without my knowledge) that said that we as parents decided not to move forward with surgery because of the extent of her defects. It was like reopening all my wounds. I couldn’t believe what I was reading. They made it seem like we didn’t care enough to have surgery for our daughter and that we didn’t value her. I knew all the issues she was going to have when I was 20 weeks pregnant and despite pressure from every doctor I met I continued my pregnancy and talked with every doctor possible to get the proper care for my child after she was born. I loved my child and wanted her here with me. I wanted to spend every second possible with her and should have been given the same treatment that any other child would have been given. She should have been given the surgery and if that had been done she would most likely still be with me here today. I pray that you will never have to go through what I have gone through. I pray that everyone will hear about your sweet little girl and that she will get the life saving treatment she deserves.
When you are faced with signing your healthy, intelligent, athletic, and full of life child’s organs to be harvested for transplant after a sudden tragic accident, do you think that the recipient’s quality of life passes through your mind? Yes, it does! You are are under the impression (false) that your child’s organs are going to give someone a chance to do great things in life with your child’s help. You think that the persons benefiting from this gift are healthy, intelligent, and athletic as well, just like your baby was. You are giving them a chance to become greater than perhaps your own child ever would have been, which is hard to imagine because your child is the greatest thing that ever happened to you. Your most precious gift you ever received in your life would live on, in another body, maybe making a difference in the world, just like you dreamed when you gave birth to him, and watched him grow and learn. To be the best at whatever he did in life were your hopes.
If given an informed choice, just imagine, do you think your child would have chosen to give his organs to someone just like him? Or…would that be discriminating?
There are guidelines. They are not discriminatory. They are there for a reason. They are applied to all donation recipients, not just some.
This is probably the wrong site to post this comment on. However, it is an opinion on the topic.
CHOP is where I signed my “life” away.
I can’t even believe I just read that. Not only is it a death sentence, it seems as if the staff at this hospital treated this like a game they were trying to win. Every time you had an idea, it was shot down.
In addition to the other hospital suggestions, I recommend Hasbro Children’s Hospital in Providence. Every person I know who has had a child in need of care has said they were very supportive and loving.
Please keep us updated on your beautiful child.
Wow! My husband and I have a 9 year old with Down Syndrome who had some pretty serious medical issues his first 3 years. We are absolutely appalled about this. If there is anything we can do to show our support for your family, we are on board.
So sorry to hear about this. They have no right to decide something like this, This really ticks me off! I’m sharing this with everyone I can. It’s unreal. I know many people who have a mental or physical disability who have been told they can’t do this, or they won’t live past this, or there won’t be anyone to look out for them. Good on you for telling that to their faces. It’s appalling!
Don’t stop fighting for Amelia! She’ll be worth it!
“I have been warned about you. About how involved you and your famliy are with Amelia.”
What? Of course your involved, your her mother! What if it was his daughter? Would he recommend not saving her then? How dare he! I’m so angry I’ve got tears in my eyes right now.
I’m spreading the word, and I wish I could do more. Your family is in my thoughts and I hope your beautiful little girl gets the medical care she needs.
Hello, I am so distressed to read this about your Amelia! I do not have a disabled child, but I did have a double lung transplant at UPMC Presbyterian in Pittsburgh. I cannot imagine what it must have felt like on Jan. 10 when you got this information. I feel sick toward the Doctor and the social worker. I believe that all people have a right to life no matter whether she is mentally retarded or not. She has a support system, you and your husband, and I’m sure friends and family. Please continue the fight. I am absolutely on your side in this. God Bless you, your husband and especially Amelia. . .
Sandy Ozanich
My suggestion is to seek out Catholic children’s hospitals. Think of the story of baby Joseph from Canada whom Cardinal Glennon in St Louis helped, though he died a year or so (?) later. Consider Catholic hospitals, pronto. You are in my family’s prayers. Keep fighting for your child’s life. You are here on earth to do this. This is your vocation. God be with you all.
Back in the 50s, my husband Mike was diagnosed with a kidney problem and his parents were told he would die by the time he was 8 years old. His parents came home and his Mother would not hear of such a thing and sought out another Dr. He took up the reigns and tried different directions for Mike, as time passed Mike passed being 8 and during his grade school years he was in and out of remission with his illness. Mike continued to celebrate birthdays and went into remission for 14 years and then the illness returned in his early 30s. Luckily new ways to handle the illness had been learned and although there have been several setbacks through the past 28 years he continues to live some 50 years from the inital Dr. visit. Mike is now a grandfather and enjoys life thanks to his Mother and a Dr. who cared. A rare breed these days it seems. Please search for that special Dr. who will care for you and your daughter, so that one day she will be in her 50s. God Bless
I have written to his Excellency, Charles Chaput Archbishop of Philadelphia to see if there is any way he can advocate for your Amelia in this serious affront to the dignity of her life. God keep you.
I am sorry. I have a child with developmental delays. I have been sent a letter stating he met his lifetime limit for therapy before President Obama made lifetime limits illegal. I hope your daughter gets her transplant. I cannot imagine that your child would be denied a transplant in 2012.
Sincerely,
Debra
Right, like Helen Keller would never be a productive member of society. Or Temple Grandin would never be a productive member of society. Or… I could go on and on. It infuriates me that a CHILDREN’S hospital, of all places, would have that kind of philosophy, that they can judge how a person’s life will turn out based on something as insignificant as mental development. Your family is in my prayers as you seek treatment for your daughter.
A.I. duPont Hospital for Children of the Nemours Foundation
Wilmington, DE
302-651-4000
Best Doctors — Hands down
Incredible patient care
Considerate of family members
My first born had brain surgery at duPont as well as she spent 10 days in the PICU. I was impressed by the level of care we received. Give them a call.
Many prayers for your sweet, DESERVING Daughter and for you!!
This, of course, is evil.
There is an argument to be made for not taking heroic and costly measures to save the life of a person whose life will not be substantially prolonged by those measures because they’re already dying of something else.
It would, for example, be immoral to deny Kidney X to Transplant Patient A in order to “save” the life of a Transplant Patient B if Transplant Patient B is going to die a week later for other, known, unavoidable reasons. Kidneys are scarce resources to be allocated to best benefit, and a week of life for Patient B is far-and-away unequal to probable decades of life for Patient A.
But that is comparing life for life and time for time. One must do it that way because All Men Are Created Equal And Endowed By Their Creator With Unalienable Rights; a corollary of this is that one week of Patient B’s life morally requires equal treatment under law with one week of Patient A’s life.
And of course we are here comparing innocent persons; if Patient B has committed a capital crime and is on death row, the math changes again.
What one can NOT do is say that one week of Patient B is inferior to one week of Patient A because Patient B is retarded, or blind, or has Tourette’s syndrome…or is black or white or Asian or Hispanic, say.
That violates equal protection under law.
A week for a week is one thing; one must sadly make such distinctions when working with scarce resources.
But a week for a person who by accident of birth has a minority characteristic or an impairment is, in the eyes of their Creator, of no less inherent dignity and value than a week without those attributes.
Or is the entire “equal rights” philosophical framework of our society mistaken? Were the Nazis right after all? Are some people less human than other people? Are we all equal…but some of us more equal than others?
This is the kind of thing that happens when we base our society’s recognition of (and our willingness to defend) a human being’s rights not on their membership in the human race, but upon their ability to clearly and articulately petition for their rights to be defended in court, backed up by an interest group and some power politicking.
May God have mercy on our souls.
I’m so sorry that your family has to deal with this; how incredibly sad. In your post, you talk about staying at CHOP and pushing for the transplant there. You might want to look into Bernard Kaplan, who is also a part of CHOP Nephrology. My daughter saw him about two years ago while Nephrology and about 6 other specialties at the hospital were trying to find out what was “wrong with her.” Of all the specialists we saw, he was the only one to look me in the eye and ask me what I thought was wrong with my daughter. In spite of the other specialists’ spoutings about “skeletal dwarfism” and “osteogenesis imperfecta,” among others, I told him “Nothing.” He smiled and said, “I don’t think there’s anything wrong with her either.” And he was right. We’ve seen a lot of docs at CHOP and over all, I am so thankful for them (they saved my son’s life), but sometimes they couldn’t see the forest for the trees. Dr. Kaplan had a very different way of “practicing medicine” and you might want to look into seeing him if you haven’t already. We’ll be praying for your family and Amelia. CHOP has received a very deserved flogging over this and I truly hope this serves as a wakeup call to them. God bless your little girl.
I’m completely shocked at what I just read. Let me say that I’m not sure how I feel about transplants to begin with but….If a transplant is good for one child than it should be for another child.
Your daughter is precious! and a living human being! These are not doctors they are heartless with no compassion.
I don’t know if I could help you in anyway but I’m here. I will be praying for you and your family!!!!!!!!
TG-
First I want to say how very sorry I am for your loss. Obviously you still carry the pain of losing your child, as expected. But let me ask you something. You say how great, intelligent, athletic and wonderful your child was. I’m sure you are right. But don’t you think every parent feels the same way about thier child? You can’t determine a person’s right to live on this earth based on their batting average. I don’t mean this to be offensive at all, I am simply saying that any child is precious and irreplaceable to a parent regarless of talents or abilities. As a parent you move Heavan and earth for your children. To stand by and let their life end based on a guideline is not acceptable. Your child was untimely ripped from your life, these people have a chance to prolong their daughter’s. Just because the recipient of donated organs is not “ideal” and might never run or jump or function the way you and I would, there is still a soul inside them that deserves every breath they have. You know the pain of losing your baby. Rathar than focusing on who the organs go to, it would be better to be rejoice in the fact that your child spared other parents the heartache that you feel right now. That in and of itself is a great accomplishment. I will keep you in my prayers.
Thank you for sharing your family’s story. I shared on FB and Twitter.
I just read your article about your daugther Amelia. My heart goes out to your whole family. Words can’t express what your family is going through at the time but know the Lord will substain you during this time. Pray and ask the Lord what you should do about this situation. Life is short and we do not know when our time will come. I will keep your family in my prayer that He will direct you in how to handle this issue with your daugther and her illness.
Lord, your word says you would be with us at all time, I ask in the name of Jesus Christ that Peace that surpasses all understanding will fall upon this family in the name of Jesus, and you will give this family favor in this situation with Amelia. Lord, you know the hearts of all your children and I ask you give this famil direction in how, where and who to go for help in their time of need. Lord, take all those tears and heal this family from all the hurt they are feeling, and give them some joy as they need in at this time. Lord, I give you Amelia, and your will be done in her life, keep her safe, and bless this small child because she is your child, you have given this child to her parents and your will be done in every area of this childs life. We thank you, you are a God who loves his children no matter what situation they may be in the name of Jesus Christ, who is the healer of his people. Keep me posted love to hear how things are going. I have open my facebook and send your info to all those on my last and hoping they will respond and the list will go for forth with their friends.
My son has mental retardation- he is a cancer survivor- because the doctors attacked the cancer aggressively. He was diagnosed in 2009 at age 34 with a stage IV Lymphoma. I was terrified that they wouldn’t treat him the same as a lawyer or a husband or a father because he is a mentally retarde person- who loves sports, watches football, basketball and baseball incessantly. Who loves his family and loves to go out- any time any where- he is a Special Olympics champ! But I worried that they would turn us down. They were so kind and so aggressive with treatment- and never did his IQ come into it! That was our experience with Moffitt Cancer Center in Tampa Florida nd their affiliate Space Coast Cancer Center in Brevard County FL. My niece has a son with Down Syndeome who was treated aggressively at the Children’s Hospital of the King’s Daughters in Norfolk, VA- and at about 6 months he was strong enough to have open heart surgery at Boston Children’s Hospital. Find a team who cares- I wouldn’t trust that team to put your precious baby to sleep for surgery- I would look at other hospitals and have a fund raiser if necessary to fund the surgery. Have a donor fair where people can come to be tested to see if they are a match, and collect donations for your travels- because your local hospital is not the place you need to be. Some doctors have God syndrome- it seems the whole staff is playing God there!
I would bet you would have a case for discrimination based on disability, per the Americans with Disabilities Act. I would contact an attorney to determine if this is the case, and follow up on this. I hope you obtain her right to a kidney transplant, and will sign the petition for this purpose.
My older sister has severe brain damage and I can’t begin to describe how angry your story makes me. Do what you can to spread this story. My sister used to qualify for physical therapy, but can no longer receive it since she has been labeled “maintenance”, meaning she is not a priority since she will never recover. I talked to my mom and our advice would be to try other hospitals and to bring this to the attention of the public. I would advise you to take out any comments you make related to the doctor’s skin, it might be a stumbling block to people sharing your story and you want as many people as possible to share it. I wish you the best, and I will pray for you and for Amelia
This is pure evil…and not to be tolerated. We all need to share this story far and wide. My son had some serious urological problems and I would HIGHLY recommend Children’s Hospital of Boston…and Dr.Joseph Borer, and Dr. Carlos Estrada. They are kind, compassionate and beyond brilliant. Is there an e-mail where I can talk to you personally? God Bless…and many prayers ascending for your beautiful little girl.
Run…do not walk to another hospital. The docs on their transplant board are clearly not qualified to deal with your child. I would have ZERO confidence in this team to do a successful procedure on your child. You have been given a great gift to see this before you hand her over to surgery. Best of luck to you and your family!
Oh this just tops off my day so much you would not believe (well actually you probably would). I have so much smoldering anger today related to quality of life and who gets to decide what that is for other people and then use that to make descisions about the medical care they are willing to provide. GRRRRRRR$RR I am so angry with you. Keep up the fight, our children and our little brothers and sisters are worth every tear of frustration and every angry coversation we have fighting for them. EVERY SINGLE ONE. Hang on in there and know that for every idiotic, moronic, unfeeling, ignorant, prejudiced “insert every expletive you can think of here” person who stands in the way of their beautiful, wonderful, inspiring, QUALITY filled lives, is one of us, someone who gets it, who gets them, with all their challenges and all their trips to the hospital, and all the scares they put us through and all the JOY and LAUGHTER and HOPE they give to our lives. We get it, we get it with you, with them and for them and long may we continue to fight.
Godbless
In response to TG, I do recognize that that might be a consideration for the donator’s parents. However, I don’t see this as in issue in this case. The family will be providing the kidney for Amelia, so the reasoning behind why she was disqualified for the kidney is irrelevant. Amelia will not be taking away another child’s chance at a kidney, this kidney will be donated specifically for her. Basically the family is saying that they’ll provide the kidney, all the hospital needs to do is the procedure. I am appalled that CHOPs would just take her off the transplant list. We are all granted the rights of life, liberty and the pursuit if happiness. The transplant is a part of Amelia’s chance towards life and happiness. I wish you the best in fighting for Amelia’s rights
Although outraged about your situation, I am not surprised at all. Welcome to the world of parents of children with rare conditions who are “case studies in medicine” or “guinea pigs”.
I am the mother of a wonderful 13 year child with achondroplasia (dwarfism) who appears to have been born with a rare case of hydrocephalus which looks like doctors are reluctant to address despite the fact that has caused her to lose intelligence and has brought us some other serious problems in addition to her spinal cord problems.
The sad part is that our lives are turned upside down while trying to navigate the complex, sometimes cold, detached world of medicine where doctors are regarded as GODS and parents are trouble makers.
I have been through hell with what happened with my daughter. For 3 years, doctors in Miami were giving us the run around with all her symptoms. It got to the point that they thought that somehow we or her were making up these symptoms, which was an absolute insult to me because I am a mental health clinician and to her because my kid is a well adjusted child despite her situation.
In our efforts to try to save my child, I started video recording her symptoms for 2 years, since they would come and go. Also, I went to several states and visited several doctors that were familiar with her condition only to be told that it could be something that she was making up because they have never seen a case like her. I had doctors tell me, “she is a case study”; She is “highly specialized” and the list goes on. These were polite ways of telling us, we do not know what is going on with her. I have learned that when a doctor tells you that is a “behavior issue”, that she might be manipulating you; and he or she is not in psychiatry or psychology I get very ANGRY because they are insulting my child and me as well.
Children normally do not want to be sick. My daughter was in and out of the hospital for 2 1/2 years and nothing got done. They knew that she was losing IQ and still they were just telling me to just observed her, which I have been doing since the day she was born. I have been the one noticing and recording the symptoms that have led doctors to discover the problems that later on required major brain surgeries.
This attitude of doctors forces parents like you and myself to take proactive roles that later on challenges their knowledge and sometimes reputation and places them in a defensive way and us (parents) in an unwanted adversary position which ultimately, do not help our children. I am one of those parents whom doctors have said, “you want to diagnose your kid”; “you know too much”; and so forth. The answer I have is that I would not be doing all that if you would simply tell me what is going on with my child. As I tell them I would rather be laying in the beach watching my kid play and drinking Margaritas while reading a good book and not a medical journal.
The toll on my kid was tremendous because as a result, she developed learning problems that were not present when she was born. Now, for the last 2 1/2 years I have been in an emotional roller coaster trying to have doctors tell me what was wrong with my kid. I have sent her records to doctors in Seattle Washington; Los Angeles, CA, Johns Hopkins, Baltimore, MD; Madison, WI in order to obtain opinions as to what could possible be going on. I have spoken with doctors from Canada, Japan, in order to understand my child so I could help her. I used to read massive books and medical journals in genetics, neurology, neurosurgery, neuropsychiatry, brain disorder, anatomy and physiology and the list goes on so I could understand her symptoms. The more I knew, the more threatening I was to doctors which is not what and how I wanted to be portrayed.
My turning point came on April 19, 2011, when I rushed my child to the ER in Miami because she was having problems breathing. The ER Department was ready to discharge us without addressing her issues. I got upset and I showed them a video recording of her breathing pattern and how she would stop breathing at night. Even with they video in my hands, the hospital said to me: “She is highly specialized case and I suggest you address the issue as an outpatient.” I asked them, “What am I supposed to do if she goes into respiratory arrest?” They shred their shoulders and looked at each other like well what do you want us to do type of thing. That is when I said, “If she dies because you in a polite way are denying her care, then I will sue you in a not so polite way.” After this threat, they hospitalized her and conducted a study that showed that my kid would stop breathing 108 times at night.
This is when I decided that I needed to do something more so I contacted Dr. Carson at Johns Hopkins and he took her case base on the sleep study and the video I had since her MRIs did not showed compression at the cervical junction area. Dr. Carson was able to remove a mass at the cervical junction area that was causing this serious breathing issue. Thanks to his kindness my kid is smiling again. Although my child is not completely recovered, at least she is enjoying being a child again and not a science experiment.
I become frustrated as to how the healthcare system sometimes play with the lives of our children. I have always said that in order to understand what we go through, you have to have a child like ours. Even in our world, “the world of parents of children with disabilities” there are differences among us that will mark and shape our lives based on the needs of our children. A “medical child” is a great challenge to any parent because it requires to navigate the medical world and sometimes parents are not regarded positively.
I have received compliment from kind and good doctors about the way I carry my life and the life of my daughter and what I have done for her. Sometimes they look at me with admiration. However, there are those that simply stared at you with this look of “I do not want to deal with this” and are not so warmth. Those are the times when I remind them of the “Hippocratic Oath”.
One thing I have learned is to be grateful for what my child has brought to my life. The level of understanding about the world, life, and the things that matter to most are instilled in me because of my daughter. I love her dearly and I empathize with your journey because I have been there and done that. It is painful to see how sometimes we are just a form of “commodity.” Do not give up and you will be in my prayers. I will pass forward this comment made to me by many of my daughter’s health care professionals, “She is lucky to have you.” God Bless you both for what your are doing…
Sincerely, Nerys Baiges
It occurs to me that one factor that influences those who set rules against life-saving measures for children with MR is that many children with MR grow up, their parents become ill, the relatives won’t take the child-in-an-adult body, and the disability rights movement has made sure that there are not enough institutions to send the former child to. I myself was recently in this situation. My daughter is 20 now, mental age average about 7 years old (she has phsysical disabilities as well). I have lived under severe stress for too long and was given some hefty genetic vunerabilities so I am physically and mentally ill. I have no family. And there is no place that would take my daughter. No place that she could be kept alive as a couch potato, much less LIVE. She and I were *extremely* fortunate that a former teacher of hers found out about my plight and offered to foster my daughter until funding for homes that must take her comes through (an 8-year waiting list.)
Without institutions, where are they supposed to go when there is no family left? I couldn’t even find respite care to take her when I was suicidal and needed to be hospitalized.
The problem lies not just in the cost-of-medical-care vs productive-member-of-society. Part of the answer lies in admitting that instituions are necessary, stop closing them and instead work on improving what happens there. (Pay the staff a living wage, etc. )
After my mother delievered her first baby, Sarah, the doctors found out sarah had Down Syndrome and instesd of a happy moment, there was silence and stares around the room. My mother did not hold her new baby, but was given a book about the negative aspects of people with Down Syndrome. They later found out Sarah needed open heart surgery, incresing her chance of not surving due to how weak she already was. But my strong and determined sister got though the open heart surgery and fought for survival. She continues to fight everyday for strength and social acceptance. She is 19 years old and has won countless metals at Specail Olympic state games and down hill skis double black diamonds. I believe anything is possible. You go Amelia and be the best girl you can be(:
I am in tears. I am 22 weeks pregnant with my first child. As far as I know, I have a normal, healthy child, but who really knows what he will be like after he is born. I guess this upsets me so much because I cannot imagine how I would feel if I had a child with “difficulties” who was denied a life because they are not “normal” by society’s standards. What is most appalling to me is that you said YOU/your husband/a family member would donate the organ, yet they STILL say they won’t do it. WHY? WHY? WHY? “TG” above made a stupid comment about other people’s organs being donated, and who they would like them to go to..> Well, if you want to donate an organ to your daughter, why can’t you? I am so sad about this. So very sad. I would love to know who decided that doctors are God, and who are they to decide who DESERVES to live? Doesn’t God make that decision? And like someone already said above, what about Hellen Keller? Was she not an important person in our society? And what if this were the doctor’s daughter? How is this the way our society behaves in the year 2012?
I am sick about this.
I was shaken to my core by the story of Mia. I wrote the folowing article about her case, approaching it from the standpoint of the troubling implications of sitting in judgement of a human life. My prayers are with you. I tried to contact your site on Facebook, but was not able to find a channel.
http://globetribune.info/2012/01/17/a-parents-heartbreak-transplant-denied/
Praying for you!
Your daughter is beautiful! I am so angry at this doctor & his rules! I am praying for your family & I hope she gets the care that she deserves. I read your story on The Blaze & my first thought upon reading the headline was “I’ll give her one of my kidneys!” After reading the whole story, I realize that you have family members willing to donate. Keep fighting for Amelia & know that you are not alone.
This is no surprise that a Pitts hospital would deny this operation. I had a 25 year old brother who needed a heart and kidney but because he was dying from this and not 100% healthy he was denied even after I offered to give my kidney to him. The transplant team is not a very caring team. Some Dre. Didn’t even understand why. So the result is I lost the joy in my life almost a year ago as we had to watch my lil brother die because the Dr.s got to choose his life or death. I offer all my support to ur family and my kidney to if it can be taken. Losing my brother was the hardest thing I ever had to do. God Bless You All.
I am a teacher of special needs children and I had a little boy with Wolf Hirschhorn and he is to this day one of my favorite students. He is such a gift to everyone around him! When he learned to walk, we had to show off to everyone at school and everyone cheered. He loves to be chased and teases and laughs with everyone around him. I can’t imagine anyone telling his mother or me that his life is not worth anything because he is mentally challenged. Shame on those doctors!!!
http://researchnews.osu.edu/archive/orgtrans.htm
Please read this article about mental retardation and benefits of organ transplant! Maybe they can help! And hire a lawyer. Good luck to your beautiful daugter and your family!!
Prayers are on the way. Amelia is a superbly beautiful child with a pure soul. How anyone could not see that and want to protect it is beyond me. God’s blessings!
“I point in his little, brown pudgy face”
Is there any reason to include his race at all? Is there something wrong with him being brown? Did you think it impacted on his decision?
TG-perhaps if you read the article thoroughly, you would have noticed that they or their family are donating the kidney. They are not looking to be put on the donor list. I’m sure that whoever donates will be fully aware of this beautiful little girl’s “quality of life”. You were right that this was the wrong avenue to post your comment. I hope that you are receiving help with your situation and one day will learn not to take it out on innocent people who did nothing to deserve your harsh attitude.
Find another doctor, get a second opinion. Be warned that once you start down the transplant cycle, you better have a lot of family. People with transplants are fortunate to get 10-15 years out of a kidney, many don’t even get that. The anti-rejection medications are expensive and intensive to take. Once you run out of family donations, the waiting time for a transplant on the list is at least 5 years. Just because something is possible medically doesn’t mean it’s the right thing to do. I’m not making a judgement, I’m just saying.
The people on this comment thread complain about the cold, detached nature of the specialized doctors, and I just need to know, can you blame them? These people deal every day with people, children, who might not have a life, or a future, or even another day. Do you expect these people to invest an emotional attachment in every person they help? Could you handle watching child after child suffer or die, knowing that YOU were the one who was supposed to know things, YOU were the one who was supposed to fix it, and that in the end, you failed? If you loved every sick or disabled child as your own, how would you live with he pain?
I’d think that the size of the donor kidney would have to be very small and not that of an adult. That may be the reason for disqualification from a family member (you can’t coerce kids into giving kidneys). From a deceased donor? If the life expectancy is less than 5 years then that may be the reason. I suspect there’s more to the story here …
Look again.
Here’s the money quote:
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote… you can then take it the ethics committee but as a team we have the final say.”
Final say? Really?
Where did these lawless cretins get the right to say Amelia is NOT an American Citizen with the same fundamental rights of every other American?
Where do THEY get the right to suspend the protections of the ADA and the Constitution of the United States?
Where do THEY get the right to discriminate against the civil rights of a unique class of American Citizen?
Where do they get the right to murder by neglect?
If they would conspire to “murder by neglect” a child with a socially depriving deficit, would not the apparent naked depravity of their premeditation and conspiring for money — albeit money saved or influence/peerage gained for their pocket/career — represent compelling evidence of clinical psychopathy or sociopathy within themselves?
Are they themselves not demonstrating DEPRAVITY in conspiring to withhold care in a premeditated manner that will murder the subject child?
Think? Is there not evidence of an apparent conspiracy to murder an entire class of children by withholding life saving medical treatment? Are they not admitting to conspiring to operate what may yet prove to be an unlawful and discriminatory monopoly on the access to medical capital?
Murder by neglect. What do your state statutes say?
If the social worker, physician, hospital administration and associated cohorts have not (in this case) conspired to murder (by neglect) then please explain how their conspiring to deny care not intend to result in the murder of the child; how it is not an attempt to murder the child; how it does not result in the targeted killing of the subject children?
Fair questions of those who contend the killing is preferable to equal protection under the law for the subject American Citizen who has committed no crime.
If a public business like a hospital or clinic has to build ramps and replace toilets so a handicapped or retarded person can use the resources of that institution, how then may such an institution and its employees conspire to intend the premature death of such persons?
How is the prospectively murderous act of refusing the retarded access to such knowledge capital and medical services by discriminating against their handicap not also an unconscionable act?
How can this be reasonably done to them while granting access to others who appear visibly healthy but may be otherwise depraved in their harboring a militant desire to murder the retarded? How? By some apparent institutional conspiracy to operate a formal policy to authoritatively induce the parents of such retarded children to betray the child and consent to an apparent official policy of murder by neglect?
What am I missing here?
Grand Jury?
Wouldn’t that be a proper start.
I am spreading the news this is making me sick to my stomach. Praying and spreading the word. God help people like that daughter. Is their anything else we can do other than sign the petition? Rachelbbaxter@gmail.com
After reading your story I forwarded this to my 27 yr. old daughter who is a fourth year medical student to get her response to it and like myself she felt this was not the way this family should have been treated. She then forwarded the information to a friend and this was their response: (remember this o’s a response of other trained medical personal!)
My friend that worked with Easter seals (MR group) says this:
I am completely appalled and they broke the law, depending on what state they’re in!!! It is illegal to refuse service to anyone because they are mentally challenged!! Also, I’f the hospital is a not for profit
they can not refuse the surgery!! The family needs to contact their state senator and launch an all media campaign against the hospital.
I do hope you are able to raise enough impose that this medical team regrets their decision!!!
My son, who is now 25 yrs old, was born with Wolf-Hirschorn Syndrom. I was told things like he would die before age 6, he would never be functional, never walk or talk. he was lucky that he had no organ problems, but the first 3-4 years were a challenge. As I said above, Tim is now 25 yrs old……he is the only 1 of my 4 kids that graduated High School, he is functional but does choose to live at home. He writes novels and is an artist. Denying this child a transplant is wrong. No one is being deprived of a vital kidney, since a family member has agreed to donate it. Never underestimate these kids. I never gave up hope. Doctors are not God and have no idea what Amelia can accomplish given the chance.
The laws need to be changed. If a doctor lets a person die because of a mental problem. It schoule be the same as murder if the operation would prolong thair life.By law they schould have to try to save that persons life.
Paul Hibner
I wish your family the absolute best but I’m not positive that you grasped the entire story. It sounds more like ALL you heard was “mentally disabled” and JUMPED to a terrible conclusion using “the words RETARDED (I really doubt any physician actually used that word to a parent), to incite anger in the public. I know that hospitals aren’t perfect BUT Children’s Hospitals bend backwards to HELP children…so if the physicians thought that a transplant would NOT benefit your daughter the answer is to seek a SECOND OPINION, not create an online frenzy (yes, I realize another well-meaning but factless parent started the petition) DEMANDING that the transplant be done. Again, a TRANSPLANT should NOT be done IF it’s not in the well being for ALL children awaiting a transplant and/or as the hospital suggested that your family is considering using a donation from ANOTHER child, which according to the hospital creates a ethical problem as children aren’t normally “used” for donations and of course an adult’s kidney wouldn’t fit in a child).
So as much as I feel for this family I would have and still suggest they simply GET A SECOND OPINION. Perhaps another facility would feel differently – maybe their transplant program uses a different protocol. Many of us with chronically ill children understand that if one doctor/facility says “no”, that it’s our JOB to find one that says, “yes” or “maybe” or I have “another” way or it might be a possibility next year. I feel for this family but I also want to encourage them to find the tenacity to forget this hospital – don’t take their refusal personally and GO FIND one that CAN/WILL help your child. And don’t STOP until you really believe you’ve done ALL you can.
I am not sure if anyone has suggested it yet (lots of comments), but you should immediately contact my friends over at Philly’s Center for Independent Living “Liberty Resources Inc.” These folks are FIERCE disability advocates who will fight with you for your daughter’s future. The CEO of this organization (who is himself disabled) is a lawyer and very well connected in the area. There website is: http://www.libertyresources.org/. I am sure they will be able to support you in the struggle.
I am angry for you as well. We have a 15 year old son with profound MR along with severe gastrointestinal problems. I fought with his 1st gastroenterologist from the time he was 4 weeks old until he was 10 years old about his obvious pain and malnutrition from vomiting and was given pretty much the same run-around–she didn’t want to investigate the cause because he was retarded and in her opinion, he vomited because he was naughty and wanted attention. I persistantly argued. She accused me of being neurotic and told me to see a psychiatrist. Thankfully, I am not only an RN, but also a a tenacious b*tch when it comes to advocating for him, and I am proud of it. Six stomach surgeries later for congenital blockages and he is happy,pain free and thriving. My point is: stick to your guns, be her warriors and you will find a doctor that has a heart that will help you, like we did. He took one look at my son and me and knew how badly we needed his help. There is hope. And as if you need another recommendation, I would like to recommend two hospitals in MN–both Mpls and St. Paul Children’s hospital, that have always treated our son and our family with tremendous respect, and Amplatz Children’s hospital, which is part of the University of Minnesota. Good luck to Amelia and her family!
Can an adult donate a kidney? I don’t know if my kidney is compatible but I will donate if it is.
Hi. I know that you are in difficult times now. I completely understand what you are going through. But I would appreciate if you could please take the time to listen to what I am about to say. I believe that it is not that the doctor has refused to do a kidney transplant on Amelia due to her diagnosis of Wolf-Hirschhorn’s Syndrome, but because she will have to take medication for the rest of her life and be dependent on others. I know and we all know that most parents will pass away before their children, and due to Amelia’s health condition which causes her to be dependent on others, I personally, would have not taken the transplant for my daughter. After we (parents) pass away, we do not live to see the lives of our children. I am not wishing anything–please do not mistake this, but Amelia and other young females can be the potential victims of sick-minded criminals. We do not wish to see this happen to our children or those of any other parents. One of my friends had a similar predicament as you did and the choice for her was a heart-wrenching decision, but in the end, she refused the organ transplant. I am being brutally honest as I as a fellow woman do not want other young women or any humans for that matter to be victims. I wish that our posterity will lead healthy and peaceful lives. I hope you consider the best interest and future of dear Amelia before making your decision. Thank you.
That’s kind of you… I think they are good on kidneys, just looking for someone to do it!
[[HUGS]] to you and your precious daughter. Please do not listen to any negativity coming your way. We need to hear about these injustices. People need to be made aware of the fact that those with disabilities are still receiving substandard care.
That social worker is a complete idiot too. Who will make her take her meds at 30? Whomever is acting as her guardian, that’s who. I have worked with the DD population and I think every client had a guardian/conservator. To justify denying your child a kidney transplant because she might not take her meds in 20, 30, 40 years is ludicrous.
I’m wondering if your family should contact St. Jude’s Hospital for Children. They perform miracles there as well. F*ck CHOP and their policies. I’m sure you have a life plan for Amelia, complete with plan for her care should you and your husband die. Not performing the transplant with a family-donated kidney is akin to murder. God bless you and your family and I hope you find someone who will transplant your little angel.
She Izz Beautiful Mom … And yess i am Pissed off madd as hell … But I feel u handled the situation well because i would hav went to jail an that would not hav been a good thang .. But you keep fight Mom , and we’ll keep fight an with the lord on our team fighting with us You/We Cnt lose… there are soo many badd thing i could say about them doctors but im not because that could take all year but da main focus is her … She is deeply in my prays mom … xoxo
This is just wrong. As a mother of a Down syndrome child, this makes me sick. When you do find a hospital that will do the transplant, and you WILL, if you need to look outside the family for a downer, please contact me! It would be an honor to share my kidney with your daughter
Have you tried Shriner’s Hospital? http://www.shrinershospitalsforchildren.org/Hospitals/Locations.aspx
Also, there is a beautiful hospital in IL that you might try. It is called Children’s Hospital of Illinois and is affiliated with St. Francis Medical Center. This hospital is owned by a religious community so they believe in recognizing and celebrating all human life. There vision isRecognizing God’s great gift of life, we will be a Community of Caregivers pursuing perfection in healthcare quality, safety, service and financial integrity.
http://www.childrenshospitalofil.org/
I will also forward your story to the Sisters who run this hospital so that they might pray for you and or find other resources for you.
Did you look into having a live donor? is that a possibility for her? I am a mother of 4 beautiful children and have one on the way. and I cannot imagine the pain that this is causing your family! If you are looking into them I would be more then willing to get tested to see if I were a match for your precious child! I could not imagine my life without my kids and every second of their lives are precious! Once again our love, prayers and hopes go out to you!
My prayers are with you and little Amelia…
She can have mine.
There has to be something that can be done, I’m sure i’m not the only one willing to give her a kidney..
Unfortunately you are not the first parents to hear this. The medical community is so far behind in some areas for advocacy for people with developmental disabilities. And yes, according to them it is still an acceptable term to use ‘mental retardation’ as a diagnosis.
The good news is that there is help. Others have fought this fight and won. I know that organisations such as the Alberta Association for Community Living have helped changed standards for organ transplant – and they have helped advocate in other countries.
Look for a second opinion, find advocacy groups that can help you with the words, experience and support to fight this fight. You are not alone and help is out there.
Wait a moment… Why must it be at CHOP? Aren’t there other hospitals?
I have been through this in 2004! Please contact me! My son died at 4 years of age because they wouldnt give him a kidney transplant! Your family is fighting the same battle we fought. gabrielle2006@charter.net or https://www.facebook.com/mariegabby
This whole story is SO, SO, SO sad. It’s sad that kids are born with Wolf-Hirschhorn syndrome. It’s sad that parents have to deal with the stresses and disappointments that come with raising a child with Wolf-Hirschhorn syndrome (or any other genetic disorder, although many will smile and say it’s just as wonderful as raising a “normal” child — because that’s what parents do). It’s sad that there aren’t ways (yet) of treating the organ failures related to Wolf-Hirschhorn syndrome (and many other congenital diseases) without taking away from other children who also need transplant resources (there are only so many organs that make themselves available — also from sad, tragic stories themselves). It’s sad (or at least a tough job) that institutions and the people that run them have to figure out how best to utilize the limited resources available to them to provide for the needs of an ever growing population of children who survive the early years of formerly fatal congenital disorders (because of incredible advances in medical science over the past century and especially the last 20 years). It’s sad that cute and beloved kids don’t always get what they need for whatever reason, either because of other comorbidities that preclude them from eligibility based on transplant eligibility rules, or because of insurance, or because of inadequate financial resources of the parents, or because of sad cases of neglect, or because society has not found a way to provide for those needs for an individual at a reasonable cost (to society).
And, from my perspective as a physician, it is also sad that pediatricians and specialists and surgeons who spend their entire lives doing the best good that they can for the most kids possible get slandered and disrespected and verbally beat up in fora such as this for making tough choices (sometimes the decisions come from ABOVE them, from committees of such physicians and ethics specialists and other highly qualified and proven people). That “Peruvian” mustached physician (why the physical description but no name?) had to go through hell to get where he is (I know, because I am in that hell right now — and I choose it over lucrative consulting firm jobs and business opportunities and law school because I want to do the same type of amazing good for people, young and old). Cut doctors a little slack, and be honest in your recounting of the conversation. If he really said the things you say he did, I think he could have handled the situation better. But I doubt he used that exact language. And cut CHOP a little slack. Children’s Hospital of Philadelphia is an amazing place (with which I am NOT affiliated — no bias here), as are most Children’s Hospitals. They only have so many resources to go around for the population they serve. To give to your child, they have to deny another (one that may have a chance of living a normal life). Their people have to make tough decisions about how such very limited resources can best be used. Doctors aren’t slaves; no one forces them to go to work and provide their services, just like no one forces you to go to work every day. If you don’t get what you need from CHOP, then look for another place that will provide the service. If no place will, then take a deep breath and enjoy your time with your child. And take comfort in having tried your best for your child.
I feel for you as a parent. I feel for your child. And I feel for the doctors and other care providers you have unduely torn to shreds in your post.
A sad, sad, sad story, every way I look at it.
Very sad, please keep us updated. If you can’t find a local nephrologist, I know a couple of good ones who may be able to help.
Anamarie, Amelia is currently the victim of a very sick minded criminal- a team of medical ‘professionals’ who prefer for her to die sooner rather than later. You don’t have a clue what this family is going through, at all.
MUCH smaller scale but it took us several years and a personal friend who was also a doctor to get our profoundly retarded child the leg braces she needed only because she had outgrown her previous set.
You know what the doctor standing in our way said? “She walks okay to me. I mean, she’s retarded. Where does she need to go?”
I feel so bad for this family. We have a granddaughter with Down Syndrome.Serenity will be two this year,and for the first month of her life she was in the hospital. She had to have 2 surgeries by the time she was 5 months old.
The reason i am sharing this with you is she was treated at Hershey Medical Center. Maybe your second opinion should come form there. They are very well equipped with doctors that have care and compassion for their patients, unlike CHOP how thinks a child with a mental handicap dose not deserve a kidney. Now i don’t know much about hospitals and transplants, I don’t even know if Hershey dose transplants. But there is no harm in checking it out.This is just a suggestion but you know more about this then i do.
I believe that every life is precious and that no doctor should be the one who chooses who lives or dies, they are not GOD. All children are a gift from our god and it is our job to care for them no matter what is wrong,and to get all the help we can. What kind of people have we turned into when we just let our children die because some doctor says so.
As you keep up your fight for Little Amelia you can rest assure you are not alone our thoughts and prayers are with you in every step you take.God bless you all and I hope i will be reading soon that your Amelia got her transplant and is getting on with her little life.
contact dr. kabibi at st. vincents in los angeles see if he can help you ,my niece has been transplanted 3 times from this dr.
What is so appalling was the statement made by the doctor that he had been “warned” about how involved you were with your daughter! This isn’t the fifties when doctors were looked upon as gods! In fact being advocates for our children, loved ones, came about because of that attitude; doctors were not treating patience as much as lording over the little people who had no idea what do to do.
We are to be advocates for our children, who else is going to fight for them: Big medicine? Now with the talk of health care reform, and insurance leading the medical profession instead of healing, I fear we will see more and more of this attitude!
As a nation we have no need for those who cared raise a voice for themselves, they have no say because they have no monetary power, no voice that can be heard. Is the America we want to see?
These children’s hospitals, doctors, nurses and their “social workers” and “patient advocates” think they know everything there is to know about the condition(s) they are treating and mistakenly think just because they are the “experts” of an illness that makes them an expert about your child. Be glad they did not call CPS on you (or have they before?) because apparently that is their strong-arm tactic of choice to us parents in line when we are advocating for our children in a way with which they disagree. Then, whether they call CPS or not, they perpetuate their own prejudices by unprofessional, juvenile gossip (so much for privacy, unless they are protecting themselves). I am the mother of a child with disabilities. Because of behavioral issues, I sought evaluation for my son. He was diagnosed with language and occupational disabilities, but I could not get an ‘official’ diagnosis of ASD (autism) because I could not find anyone to do the behavioral diagnosis that would accept his insurance and the school district refused (even with a request from his primary care physician) on the grounds that they were not required to do one without academic problems, and since the modifications they had in place were doing the job, they did not need, and therefore, refused to do the simple behavioral test so that the doctor who evaluated the language and occupational disabilities could give him his full diagnosis. The point of this is that the clinic that evaluated my son with disabilities at 3-4, is the same place (hospital side) where we went for his transfusions and leukemia diagnosis. My son is 6 years old. He has problems with restraint, strong odors, sensitive gag reflex, communication issues, and many other things that make him unique. All of these things I have experience with, but not the leukemia. Anyway, to shorten this long story. Instead of utilizing me as an educated and experienced resource regarding my son, helping me to train him to take pills because liquids would be a constant issue, they chose to take the opposite side — the one that was against my son’s best interest. When I sought help from the social worker and patients advocate because their answer to medication was to use several people to hold him down while forcing him to drink his medicine, and I refused to help them… their answer was to send a couple of psychiatrists to his room and lie that they were there to ‘help and evaluate my son’s autism,’ but actually, they were there to put the icing on their CPS report against me… saying I was interfering with them giving my son his life saving medications, that I was trying to force them to give him morphine when he didn’t need it, and hey, I was delusional because I said my child had autism even though they sent in 2 psychiatrists to evaluate him and they didn’t see any sign of autism, but they did see mental issues with me. (They talked to me for a little while and then spent less than 10 minutes talking to my son!) I could go into more detail, but the bottom line is, these ‘children’s hospitals’ have got ‘power’ and ‘control’ on the brain. So much so, that they are willing to insist who they are going to allow to have life saving treatment, how they are going to make them get it (i.e. we are going to install a port in you, but we can make your child take meds by mouth anyway, if we want) and if you dare to have any ideas about anything that is contrary to ‘yes,’ then we are going to make life difficult for you… and even call CPS on parents to cow-tow them into submission. Did you know, if you have an open CPS, even if you are not at fault, that you and your whole family are kicked out and not allowed to use the Ronald McDonald house? well, they know. It happened to us. We are still dealing with it. They don’t protect our privacy when it comes to talking behind our back and making sure we have problems everywhere we go. Even a nightguard(?) at the hospital “knew” who I was when I happened to share some of my home hot chocolate with him one night… how is that for protecting my privacy. And you know those psychiatrists… they came back to pretend some more… I told them they could leave and not come back, as there was nothing to say to people who would come into a child’s leukemia hospital room and lie about their reasons for being their, just to justify filing a CPS case against the mother who was trying to protect her son from abuse. One of them got the message, but it took twice for the other one. Then they sent another person from that section later, and I told here the whole story… none of them came back. I urge anyone who has had this happen to them to please file a case against them. What I have learned is that CPS is being used to power-trip on parents of very ill children. It is possible to get cooperation of children, it just requires more patience. Without hospital help and with their tactics specifically undermining my progress even giving my son anxiety attacks about medicine which I had to then overcome as well, I was able to teach my son to take pills (remember he is 6) and to accept the insertion of his port. We cannot and should not accept that we treat a patient’s physical health at the expense of his mental health… and for special needs children, and all children, this will not mean all the same things. But I do know this… if we want our children to fight for their lives, we cannot crush and dominate their spirits by abusing them into submission. Thank you for reading and God bless all of the children and families who are still fighting!
If you think it is bad now..wait until our “national Healthcare law” kicks in. People don’t get the fact that decisions about health care will be if the treatment is or is “not economically sound” People that are elderly, have brain injury or defects, or limited life expectancy will not be a priority and therefore will not be approved for many procedures that are common today
This story is heartbreaking and I feel for you and your family, I really do.
But I’m gonna have to play the scumbag here.
You quote the doctor as saying…
“These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
That there seems to be the primary reason for their refusal to do a transplant. I don’t believe it is so much your daughter’s impairment so much as it is the real possibility that the medications she would be required to take would do more harm than good. That seems, judging from what you’ve written, the doctor’s conclusion. If that’s his honest judgement, can he be blamed for it? He’s taken an oath to do no harm.
That social worker, however, can jump off a cliff. Vile worm!
But seek a second opinion. Don’t stop fighting. I hope things turn out for the best for you and yours.
I am so Sorry for what you and your family are going thru! It just shows how Sick and Cruel some people can be, not only the doctors whom absolutely disgust me but also the 2 Women on here are horrible. If it were their children I bet they would be singing a completely different tune, this is a gross injustice. I be praying for you and your family during these trying times but also for the doctors who are refusing this life saving surgery and these to women on here whom they should also be ASHAMES OF THEMSELVES!!!
Outrageous… I work for a hospital as well, and we would never pass sentence on a child with a pre-existing condition. Doctor’s have taken a Hippocratic oath to provide health care to anyone. If doctors can pass sentence on the young I can only imagine the senior citizenry is next. Boycott the hospital…
Your daughter is beautiful and after all you and your family have been through to get her this far in life, it is heartbreaking and completely unnecessary the way your family has been treated. As if her life had less value than that of any other person. I have a now-grown autistic son and completely agree with all that Rhonda wrote in previous comments. Just reading about her experiences with “professionals” brought back so many of my own similar traumatic experiences. It is a hard, hard road to advocate for a disabled child and I admire your strength and tenacity. Let me just offer that sometimes things have a way of working out even if the journey has a few unexpected twists and turns. While you are eager to have CHOP do the surgery, I feel strongly that there are better things in store for your daughter. Based on their discrimatory policies and negative attitudes, do you really them to be involved in your daughter’s surgery? Wouldn’t it be better to find a willing facility that is ot only excellent but also truly values the quality of your daughter’s life as much as you and your family do? Perhaps they have a sterling reputation, but Boston, Seattle, and Cincinatti are all ranked higher for pediatric nephrology. With the press your story has gotten and the warmth and concern of so many well-wishers, I believe you will find that place. Don’t waste another minute of your energy on them or allow them to steal the daily peace of your family. Be open to the greater good that is ahead.
Mom, PLEASE VISIT http://WWW.FAMILYVOICES.COM immediately and find the Family to Family Health Information Center in your state. Then GOOGLE DHHS OFFICE OF CIVIL RIGHTS. If that hospital takes one penny of federal money, medicaid, medicare, they are required to provide her the care she needs WITHOUT DISCRIMINATION ON THE BASIS OF DISABILITY. It is not difficult to file a complaint and you do not need an attorney to do so. Please feel free to Email me or call for more information. I am the Program Director for the Louisiana Family to Family Health Information Center and a Health advocate for families like yours. I am also the parent of a child with an intellectual disability who has spent many a night in the hospital at my child’s bedside. You can reach me by phone at 800-331-5570 if you would like to talk about this. ALL FAMILY TO FAMLIY HEALTH INFO CENTER SERVICES ARE FREE.
These medicaid bills have to stop somewhere. Perhaps if the parents would pay for services they would get them instead of leeching off the taxpayers
I am appalled at the doctor for saying Amelia is mentally retarded, people get sued for saying that these days.
Who is he to deny any one medical treatment or a transplant. I say it’s all about the money. I say take this story to the news papers and get as much publicity you can. Let the media know about this facility, and the doctor. He has no right to do what he is doing. AMELIA HAS THE RIGHT TO LIFE.
First of all, all the best to your family. Sometimes as health providers we do a poor job communicating with families and it seems that is what may have happened in your case. There are a lot of factors when considering a transplant. The big deal is not the first step-should we or shouldn’t we. That Dr. doesn’t decide. Your little girl will have to go through a lot of elaborate tests and work-ups and a committee will decide. They will look at all the factors. Getting a transplant is not a panacea for problems; it creates a bunch of problems even in a healthy person. You must live with all the side effects of the medication and a very strict schedule of medication, diet, and exercise. If you don’t, your organ will likely reject. When you have a person with other complicating medical conditions and diminished capacity to make decisions about their healthcare, it becomes complicated. Even in the best of circumstances with adult patients, I’ve seen non-compliance because the regimen is exhausting and they have terrible problems with the side effects of the drugs. The more co-existing problems you have to begin with, the more likely you are to experience these types of problems. It was wrong of the doctor to treat you that way and you should have every opportunity to go through the same vetting system as any other family. Yes, disabilities do play a role in the decision, as do pre-existing conditions, life choices (current or frequently relapsing alcohol or drug abuser), current health, capacity to follow the regimen, family support, and so forth. That means that disability is not the deciding factor but it is a factor. This means that people with disabilities can receive organs if the whole picture is taken into consideration. If someone were to donate a kidney, bypassing the vetting system, these factors should still be considered. It is a significant risk for the donor and a longer recovery, so of course you want to make sure that their gift can be used to its best advantage. Many medical decisions are just not black and white. So you are doing the right things by getting as much info as possible. It wouldn’t be a bad idea to meet up with a family of a special needs person that has received a transplant. Find out what the process was, obstacles and challenges they faced, and how they overcame them.
You can not use an Adult kidney for a small child, it is to big, and a living child the same age as her needs there kidneys..!!
I am praying for Amelia. My son is 29 years old with Downs Syndrome and multiple medical disabilities. He was born with one Kidney and is in stage III renal failure. I have often asked about transplant options and have been put off. Reading this, brought me back 29 years. I was told by a family member to go home leave him at the hospital and say he died. I had a cardiologist tell me to take him home and let him die. Many care conferences later, over 30 surgeries later, a class action law suit against the school district, and I have a wonderful son and young man that I consider a blessing from God. He continues to require medical care and 24 hour supervision but he has a rich personality and lives his life to his highest potential. He has shown us a lesson in humility, compassion and love. I would not trade him, my decisions, and battles for anything. He brings me joy everyday. Amelia is a blessing. Keep up the fight. I know it is a hard road to travel but it is worth it for yourselves, Amelia and for those who follow that need looking out for. It is sad when those who take an oath to care for people resort to playing God by picking and choosing the fittest to save and there by destroy the sanctity of life itself.
I am very sorry to hear about your daughter’s illness. Seeing anyone suffer regardless of age or mental ability is certainly something nobody wants to see. I agree with the other responders that you should seek a second opinion for your daughter. In the mean time love her and keep her healthy as possible and find a support system for yourself. Transplant isn’t a walk in the park, and its isn’t a miracle for everyone. The immune suppression alone is very trying and having seen it first hand there are so many complications that can develop which has nothing to do with the doctor, the hospital, or the parenting. Your little girl faces a long and potential difficult journey. You are obviously angry right now, as any loving mother would be, but don’t let that consume you. Find the love, turn to her smiles and cherish each moment. Transplant or not there will be pain, sadness, happiness, laughter, and joy to come. Love her, hold her, and love yourself. Sometimes modern medicine can’t fix or cure everything. Sometimes the risks outweigh the benefits. Sometimes we as mom’s want the one thing that is a solution in one aspect, but that solution may also be the detriment and lead to suffering. Try for a consult at a few of the hospitals that others have suggested. My best to you and your family.
Let me just say that this doctor should not be practicing at all, anywhere on the planet. A person’s “quality of life” is exactly one of the factors that’s considered for any health condition, whether it’s for a transplant, surgery, or whatever other procedure. If a person has a poor quality of life, then they should be given every opportunity to improve their quality of life. My sister had 3 kidney transplants, one from my mom, one from my dad, and one from me. I would not recommend anyone opting for dialysis only, because unfortunately, as statistics show, a person does not live as long as someone with a transplant. Sure, the transplant recipient has to take immunosuppressive medication for the rest of their life, but what’s the alternative? There is none. If I were you, I would go to a university-affiliated hospital in your area, or go to Jackson Memorial Hospital in Miami, FL where my sister had all 3 transplants. They are world-class as far as transplants, and anything else for that matter goes. They are the best.
Hi Chrissy,
I work for a local radio station and we wanted to get your story out there for more people to hear. If you’d be willing to do an interview, please Email me back and I can give you some more info.
Horrible situation – prayers and thoughts for Mia and your family and for all the families facing such heart breaking issues.
Value your children everyone! And that God you wake up every day.
Please become an organ donor today – and if you are ever faced with the horrible choice for your precious babies – let your loss bring life to many others children.
Hang in there Mia!!! we are all pulling for you.
Everyone is looking for a way to be superior to someone. Smart people decide that intelligence is the determining factor in determining how important or worthy someone is.
It reminds me of a debate I had in college debate class. The debate topic was “Resolved: that women are superior to men.” The topic was considered by the teacher to be unwinnable, because all the opposition had to do was prove that women and men are equal. I decided that winning lay in how you define “superior.” You decide who you want to win (the affirmative, since that was the side I was assigned to)and you create a definition of “superior” that only applies to the winning side. I defined “superiority” as “longevity and the ability to procreate.”
The intelligent people who want to prove themselves superior define superiority as intelligence. It guarantees them a win. Unless we argue that their definition is arbitrary and false.
I read your story on the MSNBC website, and my head is just exploding right now. First of all, I am so, so sorry that your family has to endure this reprehensible treatment from the transplant team. I am a nurse, and I also am the daughter of a wonderful woman who lived with end-stage renal disease for 10 years. Our family had to fight for her because she was seen as having “limited quality of life”. Why do the doctors (who aren’t there to care for the patient daily) get to decide what is quality?
The reasoning of the transplant team makes no sense! They are saying it is better to have to put Amelia on DIALYSIS?! It is better for her to be hooked up to a machine 4 hours a day, 3 days a week, and eat a extremely limited diet, and take phosphate binders with each meal?!? Are they out of their minds? Medical folks just can’t grasp true family love and devotion. God bless you for your resolve. Keep fighting, as some good WILL come from this! You are already helping by bringing this issue to light. Maybe try a Catholic hospital, as they would not let the mental disability get in the way of care…or even go on Facebook and see if Archbishop Chaput would help you out at all (doesn’t matter if you’re Catholic or not!).
University of Alabama Birmingham. See them.
I REALLY HOPE YOU TAKE INTO CONSIDERATION WHAT IM ABOUT TO TELL YOU. IF YOU CANT GET ANYTHING DONE SOON, TIME IS OF THE ESSENCE. COME TO VANDERBILT CHILDRENS HOSPITAL IN NASHVILLE TENNESSEE. I HAVE TWO SONS THAT HAVE HAD KIDNEY TRANSPLANTS. ONE HAD NO OTHER DISABILITIES AND GOT A KIDNEY IN 19 DAYS, AS WE WERE NOT ABLE TO DONATE ONE. THE OTHER ONE HAS SEVERAL DISABILITIES..WE ALSO WERE NOT ABLE TO DONATE FOR HIM, HE HAS A SEMI-RARE BLOOD TYPE SO HIS TOOK A LITTLE LONGER. HE WAS ON THE LIST FOR 3 MONTHS. BUT AS YOU SAY YOU ALL HAVE A LIVE DONOR I WOULD BE WILLING TO BET THAT THEY WILL DO HER TRANSPLANT. DR KATHY JABS IS YOUR LADY..SHE HAS BEEN WITH US THROUGH TWO TRANSPLANTS AND SHE IS NOT ONLY THE BEST IN THE STATE SHE IS ONE OF THE BEST IN THE COUNTRY. SHE IS AMAZING AND HAS NEVER STEERED US WRONG. MY SONS ARE HEALTY TODAY BECAUSE OF THIS WOMAN. SHE WILL NOT DISCRIMINATE AGAINST YOUR DAUGHTER JUST BECAUSE SHE IS DISABLED. AS A MATTER OF FACT THERE ARE MORE DISABLED KIDS THAT COME THROUGH HER OFFICE THAN OTHERWISE. SHE DEALS WITH EVERYCHILD LIKE THEY ARE HER ONLY PATIENT. PLEASE CONSIDER THAT HOSPITAL SHE SAVED BOTH OF MY SONS’ LIVES. AND I KNOW BEYOND A DOUBT THAT SHE CAN HELP YOUR LITTLE GIRL. GOOD LUCK TO YOU AND YOUR FAMILY AND GOD BLESS.
I have mild mental retardation and it makes me think would i be discrimanated because i have MR too and i face discrimination all the time and even a church did that to me and would not give me a job because i have MR and also i have other special needs and i am autistic mild. With iq of 60.
I have been told i am in the middle of mild and moderate.
I want to have rights too and a ent wouldn’t listen to me when i told him i don’t want tubes put in my ears and i want hearing aids and this happen in usa indiana he wouldn’t even let me get hearing aids and i need them real bad. it hurts me inside.
Do you have a Facebook page? This blog has become a very serious topic on The Deluca Shows facebook wall. I want to help in any sort of way and I want to show that movements can happen. I want to help Amelia get her transplant, beit from a family member or donor.
I will gladly donate my kidney to this beautiful little girl and her amazing family. I would do anything I could. In the meantime, I will be praying for Amelia and her wonderful family!!
The carniage for being refused for transplant by big hospitals is greater then just mentally retarded. The list of death is greater on the end of number one hospitals then anyone can ever imagine. You see they only take the best and try for 100% good results, so they have the title BEST in the nation, so they get money for their programs and BOAST of their greatness. It’s not about your daughter or my husband who didn’t qualify either. It’s about them and their perfect records of achievement.
GO AND LOOK SOME WHERE ELSE! We went 3 different places until we found a doctor and team willing to do it. My husband is 3 years in and doing well. I wish you the best and KEEP fighting, don’t give up. And yes she may need more then one transplant in her life time, so what, others have had two transplants too.
I am willing to donate one of my kidneys to help out your daughter! Please contact me through my email. I know I need to be a match, so hopefully I am and can helpA
I have to agree a few of the people here. I personally see this as not a case against Children’s Hospital, but you have only spoke to one doctor. I personally have a life threatening kidney disease and was not originally given any hope at all. My mother was told to have an abortion and be done with it. Now 20 years later I am living a perfectly normal life without any real issues. The thing to do here is not create an online phenomena, because what does that accomplish for your daughter? It doesn’t. You need to seek a second opinion. Maybe at chop? Maybe elsewhere? All I can say it that from personal experience I would not be alive today without a certain few doctors at CHOP in that department. The biggest thing here is you don’t know how things will turn out, she may get a transplant and have a great quality of life. You never know, but please, for your daughters sake, don’t go off of just one opinion. There are a many great doctors at CHOP and they are the only reason I am alive today. If you have any questions about my situation or who you should talk to at Chop please contact me.
In the meantime my prayers go out for Amelia,
God Bless
Do all you can to save your baby. Don’t listen to what others say about what the hospital normally does. Fight for your baby.God Bless you and your family.
It seems most everyone on here saw “mentally retarded” and just stopped, became angry and ready to “force” the hospital to do the transplant. We only have one side here. Also the doctor says the meds can cause seizures and brain damage. She already has brain damage, mom doesn’t say what this entails. Can she suffer more brain damage? From what I understand her condition already causes a weak immune system and the meds she would have to take after a transplant suppress her immune system even more. So Mom insists that her child is a candidate for transplant even though afterwards could mean no immune system and more brain damage and seizures. I also know that sometimes when a child is sick or hurt sometimes parents, in their tired, stressed state of mind don’t hear and think clearly. We went through that when my sister was in the hospital it got to the point Momma couldn’t be alone when the doctors had to tell her something cause she’d hear the worst thing, focus on that and not get all the info. Now the doctor and social worker may not have handled it well but that doesn’t mean the decision was not the right one. I think the family should get a second opinion but I don’t think the public should be trying to force the hospital to give a transplant without ALL the information. There are other hospitals if CHOP is not willing. Seek a second or a third opinion if nothing else you may get a better explanation as to why she can not have a transplant. I will be praying for you and your family.
My heart goes out to the Rivera Family, I am some empathetic to this story. In May 2011 I was fortunate enough to donate 75% of my liver to my younger sister (she was 20 and I was 22). Due to her sudden and rare illness (Budd-Chiari Syndrome) causing her liver to fail thus needing a transplant, the road leading up to the transplant has been an uphill battle. The first hospital, among many other hospitals, denied her of a cadaver donor because she was deemed “not sick enough”. They said she might be eligible for a living donor, but later denied that because they believed it would be too risky for the donor, which couldn’t be further from the truth (my sister recovered faster than me!) However, she was given only month to live at best. After being denied from 4 of the nation’s “best” hospitals, we still kept fighting. We were welcomed with open arms at VCU, where they immediately started the transplant process and a week later my sister and I were in surgery. Both of us are doing great. After reading the article about Mia on Yahoo! my heart sank. How does the transplant committee sleep at night? I’m not a doctor, however, having been through the transplant process and studying it for a year I can say with 99.99999999% certainty that mental retardation will NOT inhibit the transplant process, surgery, recovery, and her life. Based on my knowledge, the only way to be turned down for a transplant is if the person has cancer (or other terminal illness), substance addiction, or other VERY rare instances. Special needs does not fall under those categories, or come even close. I know times are difficult in today’s economy for traveling but I hope the family can get 2nd, 3rd, 4th, etc. opinions from other institutions. Mia and her family will be in my family’s thoughts and prayers. You have come this far, don’t give up!
You need to contact these agencies so they can advocate on Amelia’s behalf!! That’s wrong that they would refuse to do your daughter’s surgery because she has a developmental disability!!
STATE COUNCIL ON DD
Pennsylvania DD Council
Room 561, Forum Building
Harrisburg, PA 17120-0001
Phone: (717) 787-6057
Toll Free: (877) 685-4452
TTY: (717) 705-0819
FAX: (717) 772-0738
Web Page: http://www.paddc.org
Executive Director:
Graham Mulholland
E-Mail: gmulhollan@state.pa.us
Chair:
Jeff Parker
Email: jparker@ucpittsburgh.org
PROTECTION AND ADVOCACY AGENCY
Disability Rights Network of Pennsylvania (DRN)
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Harrisburg, PA 17103
Phone: (717) 236-8110
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I cannot imagine how hard it is to have this happen to a child. As a mother, there is NOTHING I woudln’t do to find a treatment or transplant for my children no matter how much longer it would give my child, or if I had to take care of this child for the rest of my life. As parents we would do anything for even an extra day with our children.
I want to know how the people who can deny a child a life saving transplant sleep at night. I want to know how dark their souls are. Do these people have children of their own? And if they were in this situation how much different woudl it be?
WHO gave these people the right to play God? Since when does anyone get to choose who deserves to live and who doesn’t? Or who is worth trying to save and who is not?
I hope, wish, and will pray that this situation will end up ok, and that they will realize they are being completely evil by denying this transplant. I cannot express in words how terribly angry this makes me. I hope that some day those who feel they are God like in the decisions they make will have these decisions come back to haunt them.
I understand your emotions, and I feel the strongest sympathy for you as a mother. The best thing to do is go to other hospitals and seek other specialists’ opinions. Try to get the surgery elsewhere. Attempting to force a hospital to do a surgery that it medically believes is not feasable, is not the way to go.
Maybe there are better doctors in other/better hospitals that feel that they can do a successful surgery. If you can find one, that is wonderful and you should pursue it. If you get the same answer from the other hospitals, then you know you have tried every option and will have to find a way to come to terms with the outcome that nobody ever wants to have happen to their child.
God bless you and your family.
Heart breaking story. Contact the University of Utah Hospital in Salt Lake City, UT and Shriners Hospital in Salt Lake City, Utah and see if they can help you. Using a family’s kidney should have nothing to do with performing the transplant, especially if you are prepared to donate and pay for the medical costs. Your daughter is beautiful. Keep fighting for her. I would do the same for my son.
You need a lawyer. My first thought is this is a violation of the ADA.
Hello I read your story and I was astounded by the issues you are having. I would like to urge you to contact Children’s Hospital at Vanderbelt located at 2200 Children’s Way, Nashville, TN 37232. This hospital and staff are amazing. I know it’s a far distance from where you live but it will be well worth it in the long run. They will help your little girl. Good luck and God Bless
I commented earlier but I forgot to post the information. Virgina Commonwealth University is the place were we had our transplant, which was also very controversial. Here is the website, our surgeon was Dr. Anthony Fisher. He is a liver surgeon, but he will LISTEN to you and bend over backwards for you and your family to connect you to the right doctors at VCU.
http://www.vcuhealth.org/?id=411&sid=1
The kidney transplant clinic’s number is 804-828-4101, they truly are angels. I hope this helps!
I am so sorry to hear this. My wife and I have had to deal with doctors and hospitals for years who seem to feel they know what is best for our daughter as well. In the beginning, when we were making the weekly rounds of doctor visits trying to do everything possible for our Emily, we ran into so many in the medical profession who felt they knew more about our child than we did. One meeting with the head of neurology at St. Louis Childrens Hospital went something like this – we sat in his office while he spent five minutes looking over her case history, he then asked a few brief questions and the proceeded to tell us that our daughter, who was four at the time, would never improve, never talk, learn, or develop past her present state and that he could recommend several living facilities where we could place our child. My wife stood up, grabbed our child and told this man we were leaving. He said we could get another opinion, but as head of his department, he couldn’t see anyone disagreeing with him. I remember my wife’s words as we left his office. “How dare you? You barely look over her case file, you haven’t spent one second examining or testing Emily, and you’ve already decided she has no future? You can’t tell me how her life is going to be! Hell, you wouldn’t even recognize her if you passed her in the hall five minutes from now! And we were told how lucky we were to get an appointment with you! Well, here are two words a man in your position rarely hears, Doctor – You’re Fired!” and we left. My daughter is now twenty one, she learned to read and write, she speaks, plays, laughs and has a loving and supportive family. She surpassed everyone’s expectations because we tried everything and as parents, I know you will do everything you can for your child in spite of what the ‘professionals’ think. Our thoughts, prayers and support are with your family. Just know that it can get better, and there are people out here pulling for you all.
I can’t for one moment imagine how you must be feeling. Amelia is beautiful and deserves to have a future. All I can offer you my prayers and to share her story. I wish you all the best for getting a kidney for this wonderful girl.
I literally broke down in to tears reading this. this is sickening. I really believe that in all honesty that this is a type of racism. Now if it was the doctors child or social workers child they wouldn’t think twice about giving their child the transplant i have two children and i can’t even imagine. As i was reading i was saying that if i was close enough i live in rhode island and i was a match i would donate one of mine. THIS IS A COMPLETE OUTRAGE AND THE DOCTOR SHOULD LOSE HIS LICENCE. Mia is a very beautiful little girl.
The biggest factor that people are forgetting is that this is a 3 yr old. An adult kidney is too large. She needs a donor that is in her age range/kidney size. The blog left out too much information because hospitals and doctors are bound by the HIPPA laws.
If her immune system is suppressed than the surgery as well as the meds could kill her. All the people that are making comments need to realize they do not have all the facts in this event. I am sure the decision was not just based on her mental capacity. There is a lot more that goes into being placed on the transplant list than mental capacity such as a matching size and a good match with the organ to lessen the risks of rejection, the person’s immune system, etc.
This is a very sad story and I hope that Amelia can get the kidney transplant that she desperately needs. While I can understand your frustration I have to wonder why you described the doctor is so much detail. One could easily identify the doctor based on a review the medical staff at CHOP and your description of him. This makes me feel that you are also trying to get revenge on the doctor by describing him so that readers could easily identify him. While I feel for your husband and your daughter, I have to think that your story has a hidden agenda to it.
My heart goes out to your family and to your beautiful daughter. These team of doctors and the social worker are REALLY disgusting people and they will pay for their actions one way or another.
I truly do hope that there is a doctor out there that has read or will read your blog that can help Amelia!
Is there anyway that you can take your daughter to see another doctor in a different state, maybe New York?
I personally would not ever set a foot in that hospital since they already have something against you and your child! I would not trust them at ALL.
I pray that your daughter gets the care that she deserves, she is a beautiful little soul that needs to be treated equally, THERE IS NO EXCUSES for theses doctors actions and their evil words!
I am wishing your family strength in these hard moments and hope that things work out for the best for your little beautiful angel Amelia.
In the spirit of hope and compassion, we thank you for sharing this important reality of what GRAVE systematic EVILS young Mia is subject to. Shame on those who developed and support this inhumane medical discrimination against our precious children! Is there any chance that your family may make some contacts through church groups, etc. to come to Vancouver Children’s Hospital in British Columbia, Canada on humanitarian grounds? There has to be a way to help Mia! We won’t give up.
I’ll tell you what; to the parents of Mia… I’ve worked with special needs and I tell you something these children have more heart and kindness in their little pinky then most of these adults and doctors. I would be more than happy to give her one of my kidneys.. I believe in pay it forward and I would hate to see a child that young lose out on a bright future because doctors think she is damaged goods and not worthy of a kidney!! Stay blessed and keep faith! please let me know if there is anything I can do!
I’m telling you right now – she can have one of my kidneys if it matches. No BS. Bring that baby to Texas. We have Texas Childrens’ Hospital here in Houston, and they are the best in the WORLD. They’re not going to turn her down for the IDIOTIC reasons those jerks gave you. I’ve been volunteering with TCH and the Periwinkle Foundation for over 10 years – there’s no such thing as a kid with no future, even when you know they have less than a year. I mean it. If I’m a match, my kidney is hers. I’m already on the marrow donor national registry – would that help? The sooner the better. My email is registered with this comment. I WILL help if I can. You just let me know.
Ms. Rivera, my name is Anca and i am the Sr. PR and Communications Manager at the Global Down Syndrome Foundation. Your story resonated so much with us and we would like to push it on our blog and social media. Would you be okay with us using Mia’s photo and directing people to your blog?
Thank you for fighting on behalf of Mia and indirectly, on behalf of all kids and people with disabilities.
Gratefully,
Anca Elena Call
I’m so sorry you are all going thru this. I’m sure the doctors and teams feel they are doing the right thing BUT I feel they get so wrapped up in the legal and monetary parts of the whole process that they forget the human part of it all. How sad that one life is put in front of another because of a mental condition. Have they never been around a mentally challenged person? People with mental and physical challenges are people with feelings and wants and hurts and joys like the rest of us. Some of the sweetest people I know have mental limitations. I was helping a friend of mine who was mentally challenged and I tripped and spilled my water all over me and the floor and she laughed so hard as did I because I’m such a clumsy person. She couldn’t talk or move out of her wheel chair but we communicated in so many other ways. What a pleasure she was to be around. She passed away 2 years ago and the sadness in my heart still aches. My point is that to deny someone a chance for life because of mental limitations is one of the saddest things I’ve heard. I will be praying for Amelia and others like her who aren’t given the opportunity to Live. We are all Gods children. Shouldn’t God be the one to say when and if someone lives or dies.
This is a very unfortunate situation. But the bottom line is, there IS a criteria for those patients that RECEIVE and DONATE organs alike. I do believe their is a national organization that oversees this issues. Donated organs are very rare… and every attempt must be made to ensure the receipient is a good match. You can call being a “good match” worthy or deserving – or whatever you like…its all semantics. But the hospitals have a responsibility to ensure the patient that gets a donated organ is in best position to manage his/her healthcare. You don’t see drug addicts and alcholics getting organs because they could not be responsible to manage their healthcare. The same is true for someone who must rely on others for their own basic needs. I am sure this sounds harsh to many readers but this is the reality of organ donation.
This is very sad. I hope you are able to receive the care your daughter needs. Unfortunately, with limited resources in health care, I am seeing this happen more and more. I have often wondered if the insurance company or the hospital had a child in the same position, would they think the same way. I have many times had to argue with insurance companies just to get little things. I will be praying for your daughter daily.
The United Network for Organ Sharing Ethics Committee has provided the following considerations for transplant candidate policy development:
The probability of a good outcome must be highly emphasized to achieve the maximum benefit for all transplants. Were there an ample supply of transplantable organs, nearly every person in need could be a transplant candidate. To this end, it is affirmed that transplantation is not a universal option. Medical professionals, while honoring the moral obligations to extend life and relieve suffering whenever possible, must also recognize the limitations of transplantation in meeting these ends.
United Network for Organ Sharing Ethics Committee, “General Considerations in Assessment for Transplant Candidacy”, UNOS Website, http://www.unos.org/resources/bioethics.asp?index=5, or http://www.unos.org/resources/bioethics.asp (White papers) select “General Considerations in Assessment for Transplant Candidacy”
You are so inspiring to me I rarely leave messages but this story broke my heart on so many levels.I cant imagine someone not wanting to help a child especially in the state your child health is in.I too have a child with “special needs” named Mikey, he is two years old.I am in Telecommunications and am going to share this story with everyone I know, there is no excuse for this none what-so-ever…God Bless you and your family!
Go get em!!! They have no idea what treasure lies in the heart of that package they see. You win, they lose.
Praying for you and Amelia.
Blessings,
Alyson
Joyful stepmom to 2, mom to 7, including a fabulous 5-year-old with Down syndrome
Who said that there could not be “death panels” in America.
Imagine if this got applied to all of us. Imagine if all of us could be denied health care because a “team” held a “vote” that any one of our lives was not of a quality worth living?
I’m pulling for this little girl and her parents.
I am truly sorry about what you’re going through. But I think you are taking what the transplant Dr said too literal. I do believe that he was a jerk about the news, and that he could have done a much better job explaining the complications that may come with this procedure. It’s not a question of how she obtains the kidney, it’s a question of whether or not she’ll survive the surgery. And if she did, can she survive the side-effects of the medication and how will that affect her? That is where you need to take the advice of the experts. If she has been seeing the same Dr for three years, do you truly believe that they now would discriminate against the mentally challenged? Your daughters illness carries many complications, if something went wrong, you would probably be the first one to sue the hospital. I know it must be an extremely difficult and heartbreaking experience for your family, and I do wish you all the best.
I’ve dealt w. doctors and social workers for both of my disabled children for over twenty years. And I would say 1/4 of them do not belong dealing w. children and their parents. Fight for what you want or need for your little girl. (I’ve had trouble w. CHOP too. And HUP.)
I’ve had many say “Oh, we were warned about you!” Well, good! It means I am a good parent who truly loves her child and will NOT go meekly into that good night.
Go after them. Do not give up. Fourteen years ago I was a very young (23), inexperienced mother of a daughter who was born with a complex, serious heart defect and a developmental defect that caused her eyes to fail to develop. We were told she would probably be developmentally delayed, though no one providing her care had ever seen these two defects in the same child so nobody knew for sure. She was meeting developmental markers (smiling etc) on time. We were told her organs would all have problems, but all her organs except for her eyes and her heart were fine. A surgery was scheduled for her at three months of age — no sooner because ‘her bronchial passages needed time to mature’, though in the literature I read I found where the surgery had been performed successfully on younger babies. Meanwhile her condition began to deteriorate. The makeshift pulmonary tree she’d been born iwth that was keeping her alive was failing and she was doing worse day by day. A status that had been “oh, if she ever reaches THIS point we will need to be concerned” became, “oh, THAT point is OK; we don’t need to change any plans until THIS point.” Over and over. The only doctor who seemed as concerned as we were about this was her pediatrician, who worked in a different city than her specialists. She died at nine weeks of age. It wasn’t until years later, reading her medical records with a clear head, that I could read between the lines and see that this whole thing had been a conspiracy to just let her die because of her other defect. It was passive euthanasia without our consent.
I hope you find people who will listen to you and see your child as who she is — a unique human being worthy of being rescued from death even if she isn’t like all the other kids they treat. Nobody ever spelled it out for me, and I was too trusting that OF COURSE these people would want to do everything they could for my little girl. I’m glad you aren’t making the same mistake.
i agree with mimi i dont think the whole story is being told. there are alot of people on the kidney list also waiting for a transplant, does rivera think she should go the the head of the line because her daughter is diabled? the daughter needs a childs kidney that the hospital does not have, i want to here the hospitals side of the story before i make any judgement
I AM SO SORRY TO HEAR WHAT YOU ARE GOING THRU AS A MOTHER OF A 3 YEAR OLD BOY I COMPLETELY UNDERSTAND HOW YOU FEEL I WILL FIGHT AGAINST THE WORLD TO SAVE MY SON LIFE AND TO DEFEND HIS RIGHT, NO MATTER WHAT DISABILITY A CHILD HAS SHOULD NOT BE EXCLUDED JUST BECAUSE OF THAT, YOUR DAUGHTER DESERVES TO LIVE, AS SAME AS ANY OTHER CHILD THAT ARE ON A WAITING LIST! MY HEART AND PRAYERS GO TO YOU AND YOUR FAMILY…
this is so wrong in so many ways. i saw this story on the previews for 6 oclock news and without even seeing the story yet i new i wanted to donate my kidney. i am 16 years old and i cant express to you how much i would love to do this for your daughter as well as yourself and husband. i would really like for you to contact me and see if this transplant will happen. i would absolutely love to do this for you guys. here is my email please contact me stacipaden@yahoo.com
Wait, so does she have Hep C and HIV? Do you have any idea of the complications she would face with Hep C (Alone) with the impressiveness she’d have to take? What happens if the parents were to perish in a car accident (or any other type)? Transplant care is a hell of a lot more then just popping pills you know.
I feel very sorry for the parents. However, they have to realize that there is a shortage of donors and patients without developmental issues should get higher priority. Perhaps one of the parents should think of donating a kidney to their child. We may not like to acknowledge it, but health care is being rationed in every developed country, and people who can lead a perfectly productive lifestyle are not always getting the care they need. Under the circumstances the hospital’s comments are not unreasonable.
I cannot imagine having to face something like this, as either a parents or a doctor.
Both sides are truly trying to do what they feel is best.
It is so unfortunate that life gives us challenges like this and the terrible heartaches that will no doubt accompany any outcome in this incident are tragic.
I wish the family the best with coping with whatever comes of this.
To those saying Amelia needs a child’s kidney, think again. According to the American Association of Kidney Patients (www.aakp.org), “A child can receive an adult kidney, since by a certain age (usually older than 2 years) there is enough space in the belly to fit the new kidney.” If her mother donated, Amelia wouldn’t be “moved to the top of the list” as some have suggested. She would be having a transplant from a living donor, something for which there is no list.
Unfortunately the doctor is right in this case. there is a shortage of organs for otherwise healthy chidren, so they SHOULD take priority. You wouldn’t put a brand new transmission in a car with major engine damage.
I don’t have a disabled child of my own but I work with them. They are the most precious children! My heart goes out to you and your family. I don’t think she should be eliminated form the transplant list just because of her disability, but if they insist then they should respect your wishes to find your own donor. The kidney belongs to that person and if they want to let Amelia have it then by god she should get it!!! I will be praying for all of you and if I were you I think I would get a lawyer!!!!
Amelia’s Mom and Dad, Would you like us to write the ethics committee at CHOP on your behalf? I sure would like to help in some way. My deaf son was denied a cochlear implant at Johns Hopkins 13 years ago because his cognitive delays would ‘mess up their grant funding’. I am sad to hear that this nonsense continues, especially in issues of life and death medical care. Don’t give up! (We eventually persevered and got him the implant at JH, but have met many more parents than not who took no for an answer.)
I cannot imagine what your family is going through. I am 29 years old, and I was born with Cerebral Palsy. The doctors told my mother I would never walk, talk, and I would most likely be mentally retarded. I am now a registered nurse with a bachelor’s degree in nursing, pursuing a Master’s Degree in Nursing. Please let me know what I can do to help. I will share this story, let me know if there is anything else I can do. My email is ndcountrygirl25@yahoo.com
My daughter was killed in a car accident 12/28/05. I said yes when they asked if I would allow organ donation. I did not ask who my daughter’s tissues would go to. I did not ask if they had disabilities. I just said yes because I knew there were people in the world who needed what she did not need anymore. I know you said that you were not going on the list. But you know it should not matter what is wrong with the person who needs tissue/organs. It should matter what they need. A child no matter what deserves every chance we can give them to have Sucess in anything they CAN do. They have a right to a Quality of Life no matter what that is. Who do these doctors think they are? Keep fighting for her. She enriches your family everyday. I also work with people who have developemental delays. But they give us an enriched life also with the little smiles and sometimes that is all we get, but there are days that that makes my day so much better. I hope someone listens to you. There is an old saying “The squeeky wheels gets the oil.” So keep talking until the right people listen. Someone will.
My heart truly goes out to you! I am a parent of a child with developmental disabilities so this story really hits home for me. Isn’t the doctor in fault of discrimination? I mean how in the world can a doctor deny a child a transplant because of developmental disabilities?! This story makes me so upset! I will be praying for you and your beautiful little girl and I pray that you find a doctor who will do the surgery for her. God Bless You, Jen
I know a person who is very NASTY, hates everyone, has no family support who just got a transplant and they are on welfare. Plus this person is in his 60’s. This littlegirl will never hurt anyone. Ever!
This doctor is a waste. CHOP is great though. My child goes there and is handicapped. CHOP should cut ties with this doctor.
Maybe if she was a sports hereo like that drunk Mickey Mantle she would get the transplant ahead of someone who really needs it.
My heart goes out to you and your family. I am appalled at what I just read. You are in my prayers and I will share in any way I can to get the story out. I wish I could do more for you and your family. This should never happen to anyone. You keep on fighting and I am sure that a miracle will happen.
There are good reasons for the exclusion criteria for organ donations. They are extremely risky and take a lifetime of hard work and dedication to pull off. Your daughter has a genetic disease that has made her very sick and unable to regulate her own body. After the kidney is transplanted she will be lucky if it takes or if her heart doesn’t shut down. Then what a new heart? Then there are the hospitals. Your little girl will spend the last few years of her life, because this is not a cure, in and out of the hospital in pain. Does she understand why you are wanting to put her through the surgeries? Perhaps we should focus on her now as she is as a happy little girl rather than what we want her to be but will never be.
I’ll bite. My child, who could barely survive surgery, getting meds that cause them pain and seizures just so I could hang onto them while they waste away for my own selfish reasons should be saved!
It’s sad to say….. I know your pain.. đź™ My daughter Faith was born with Double Outlet Right Ventricle and diagnosed with San Luis Valley Syndrome which is rare.. It is completely impossible to find any information about it.. She had open heart surgery 9/11/07 at 3 1/2 weeks old.. We were told she would be great with no other problems beside some developmental delays.. A year later Faith was diagnosed with Restrictive Cardiomyopathy and would need a Heart Transplant.. The oldest a child has survived is 10.. About 2 years ago Faith went through a mild case of heart failure and that was the first time she was declined a transplant.. And it was because of her DEVELOPMENTAL DELAYS and they also is using the fact that they dont know enough about her syndrome.. Faith has been declined twice from Childrens Hospital in DC.. We got a second opinion from Johns Hopkins in Baltimore and they said the same thing.. Her pediatrician has been in touch with CHOPS but they never gave us an answer, but, reading this… It doesn’t sound like they would be willing.. Faith’s Cardiologist reminds me every visit that at any point she can go for the worst and we need to cherish every moment.. đź™ It’s very hard everyday being afraid it may be our last.. I really don’t understand how they can be the way they are with children and willing to give an alcoholic, a drug addict or a 60-70 year old a chance..
I’m like you Ms. Rivera, the parent that is a strong advocate for their chronically ill child. Clinical professionals are challenged by us because we challenge their knowledge and opinions. Keep advocating and a solution will be realized for your daughter – perhaps by a different health care system. Be strong!
This is one person’s version of what happened, and we all know that in retelling we all tend to embellish the facts (if you deny this, you are lying to yourself). The hospital and doctors are banned by law from giving out any information on this child’s situation, yet the parents can scream and blog all they want about what an injustice the hospital and doctors are doing to their child. Doesn’t seem fair. It also isn’t fair to the hospital and doctors when other bloggers such as Sunday Stilwell jump on the bandwagon without having firsthand knowledge of the situation.
To have a special needs child in need of a transplant is an unbearably sad situation, but until ALL the facts are presented, Ms. Rivera’s rant is nothing more than a tantrum thrown on the internet because she didn’t get the answer she wanted.
I’ve sent this out to some of the people on Twitter that I follow and hopefully they will retweet to their other followers. Hashtag #helpamelia
This article has been forwarded to the CEO of the Children’s Hospital of Illinois. They are wonderful there. I know that they would be willing to help in this situation!
I’m going to have to agree with the hospital on this one; unfortunately, although it is heartbreaking for the family, the cons of society burdening the cost and labors of her medical care do outweigh the pros of continually providing you with peace of mind for your disabled child.
I’m outraged, to even imagined that a doctor would have the heart to say that to a child’s parents. As parents of children with special needs we need to raise awareness, and let people know, that our children have as much right to live as any other human being. My prayers will be with the Rivera family, and their beautiful daughter Amelia.
We do not have the entire story. That much is certain.
Let’s clarify one thing here. The people saying an adult kidney cannot be transplanted into a child are 100% wrong. It is done all the time. Do some research.
The child is not currently on immunosuppressive medication. The comment here on this blog is misleading.
There are different levels of the disease she is suffering from.
The doctor is 65 years old and is using the non-PC term “retarded”. He should be thrown out of the hospital just for that.
The parents simply want the child on the transplant list. I have not read anything that suggests the mother is demanding the child be put to the top of the list.
There are going to be extenuating circumstances when it comes to transplanting a cadaver kidney into someone. Because they are so few and far between, it is important for UNOS to pick and choose who gets one.
If a living donor is available for the child, there should be no reason for doctors to deny them this.
I am a kidney transplant recipient and I know what I talking about.
The parents should be seeking other hospitals and not rely on this single doctor. If this doctor and the social worker really said what is posted by the mother, they should both be fired.
These doctors and hospitals should use extreme caution when playing God and deciding whose quality of life is worth a transplant and whose isn’t. Who’s to say that the life of my physically and mentally disabled child, who brings joy to nearly everyone he meets, is worth less than that of the typical child who has spent the last year bullying kids like him. Should we start screening people for emotional disabilities before offering them transplants? Who gets to judge? I will definitely be posting this story on my site and hope Amelia gets her transplant soon!
I am very sorry to hear about your difficulty in obtaining a transplant for your very beautiful daughter, this must be very difficult. One of the other respondents hit the nail on the head, this does reek of an ADA violation and I would speak with an attorney. On a side note, I understand your anger, but please try to refrain from the racially-angled comments about the doctor’s nationality, his ‘pudgy brown face’… I am afraid continuing with this type of ‘trash’ talk may wind up costing you alignment with another medical provider group. Best of luck, I hope Amelia will find a donor very soon.
I’m 23, I’ve had two kidney transplants already and it was a battle to get the hospital to allow me a second transplant after my first failed. I was point blank told by a social worker that the reason the hospital was denying my second transplant was because it would cause bad numbers for the department. That’s it, I was just a number to them which could effect their succes rate and their funding. It took a long battle to get my transplant approved. I would look into pursuing legal action. It’s disgusting to think that doctors and medical professionals would treat someone’s life like a business but they do, and a big part of me wonders if their refusal to transplant your daughter is due to concerns for THEIR department and THEIR funding.
No on should ever have to feel the way you were made to feel, your daughter is a human being and deserves the same chances and medical advances all others do.
I first read your sotry on the yahoo news board. I then moved on to here to read more. I am angry that this has happened to you. I have a friend’s whose child is mentally disabled and was able to get a transplant for him. I am disturbed that they would try to do this to you. She deserves the chance to live. I and my family are praying for you and Mia. Best of luck!
I hate to hear that there are so many people who think life is only worth saving when its significant to them. If it was your life, or the life of your child?
…I understand that the waiting list is long for a kidney…But this parent wasn’t concerned about being on the list. It was just doing the surgery itself to save her child. Also, I have noticed a signifcant amount of people ‘disliking’ comments that are sincere and heartfelt with good advice for this family to take..and a significant amount of ppl ‘liking’ comments that are on the negative side. Have a heart ppl… If we can have a dozen different commercials on the tv asking for money to save a stray dirty cats and dogs…surely this little girls life is worth ten times more than that??
I will definately be praying for Amelia and that she does get the chance to live no matter what one hospitals opinion is. God bless the Rivera Family.
This is Sick! What type of doctor would allow a 3 year old child to die??? It’s discrimination! I pray your beautiful baby girl get’s her transplant soon, and you sue the hell out of those doctors! Some people have brains…but no heart (they should not be doctors
)!
My heart goes out to Amelia’s parents. My husband and I have a 3 year old special needs child. This deeply affects us. That hospital needs to respect what God says in his word ..” Do not withhold good from those who deserve it when it’s in your power to help them.” PROVERBS 3:27. My advice to Amelia’s parents is, trust in the Lord with all your heart, and do not lean on your own understanding. Seek his will in all you do, and he will direct your path. That Philadelphia hospital did not create Amelia; God did. God may choose for her to get help there, or he may help her through another facility, or another way, but whatever happens, TRUST HIM…
As a person that received a kidney transplant(the end of this month makes 1 year) I can tell you that all hospitals have very strict criteria to get on a list. I have known people on dialysis that were rejected for one reason or another. The meds you take after transplant, you will take for as long as the organ lasts. It is a process that is very time specific. I did not realize this before but now I do. If this hospital told you this, I am very sorry that they might not have used enough compassion but there are adults that get told no also. Let’s hold off on saying how terrible the hospital is or how bad the doctor is and realize that we don’t have all the facts due to HIPPA. I realize that most people won’t read this but as a person that has been through the process I feel qualified to talk about this. I pray that your daughter lives as happy and healthy as she can. Also as people have said, size does play a big part in the kidney match process. A liver can be split in half but you need a whole kidney. That is why you can’t put a adult kidney in a child.
Stay Strong! God Bless you, your family & your child for standing up for what is right & bringing attention to this matter.
This is a heartbreaking situation and I am totally on your side. We are constantly being told in the media that the term “mentally retarded” is not politically correct…we should say “developmentally delayed/disabled” or “congitively impaired”. This is not an “illness” like HIV or cancer. It’s not something that can hinder the recovery from a transplant. It’s just ludicrous that those in power can make this decision when we are drilled by our government that the sanctity of life is everything and that ALL life should be given the opportunity to live…even those who are not yet born into this world! But especially the life of a small child who has done nothing but fought to survive since birth. None of us are worthy to make a quality of life judgment on this child. And those who try to do this should be ashamed of themselves. Amelia’s quality of life and her right to it is every bit as important and precious as anyone elses on the planet.
Please keep fighting and I’m sure you will find a great doctor to do the surgery in a great hospital soon!
Take Care and God Bless You, Your Husband, and Amelia.
Becky Carr
My heart goes out to the Rivera family. My oldest son suffered a spinal cord injury in January 1999. We had to fight for everything we got and prove he was paralyzed for everything we got to help him. We asked for portable ramps that cost about $400 and were told that they would not be approved because the ramps were considered a “luxury” and “it was not their responsibility to IMPROVE the quality of his life!” He suffered a C 4/5 and T 7-11 and was paralyzed from the chest down. He had to use a power wheelchair that weighed 259 lbs plus his weight.We were told we could “pick him up and his chair and carry them up stairs!” I told them I didn’t know about them, but I don’t know anyone that can lift that much weight! After writing, emailing and making phone calls to various congressmen, we got the ramps. Another time when I took my son to the emergency room because his cathe became clogged and he was starting to get autonomic dysreflexia which could have killed him in a matter of minutes,.I told the staff exactly what needed to be done, because it has happened many times before. When the doctor came in, he matter of factly said in front of my son that people like him often went into kidney failure and don’t qualify for organ transplants because of all the other health conditions he had! I was livid! My son passed away 6 years ago today. I still try to stay involved in disability rights and help out where I can. The Rivera child has the right to have a chance at the best possible life she can have, even if it isn’t what some would consider normal. She didn’t give herself this condition and she has parents who obviously do everything in their power to keep her as healthy as possible. People who abuse drugs and alcohol are the ones that shouldn’t be considered for transplants because they will continue to abuse and will destroy a healthy organ that could have gone to someone else. I am no expert, but I think the rule is the have to be clean 3 yrs to be considered to be put on the list. I know there is a shortage of organs, but everything possible should be done to help this little girl.If the parents are willing and able to care for her, she should at the very least be put on the list. Even that isn’t a gaurantee of success, but doesn’t she deserve a chance? My prayers are with the Rivera family and all other families dealing with all types of disabilities. God bless.
Let me begin by saying that my little sister was born with this syndrome. When she was born, my parents were told that she would definitely not live to be older than one year(she is 16 now). She has gone through multiple surgeries, many medications, dialysis, and a kidney transplant. Her life definitely has not been easy, but she has a great family and all the love in the world. I could not have asked for a better little sister. I love her so much, which is why this story really makes me sad.
Everybody should be treated the same. I can’t believe they are denying this little girl at a chance at life. Everyone deserves to live (not one person deserves it more than another).
For all you people freaking out…
“More then 70% of programs exclude patients on the grounds of Dementia, active schizophrenia, current suicidal ideation, history of multiple suicide attempts, SEVERE MENTAL RETARDATION, current heavy alcohol use, and current use of addictive drugs.” – pg 94 of Transplantation Surgery by Nadey S. Hakim, Gabriel M. Danovitch
If that isn’t enough, scroll down to where it says Contraindications for Kidney Transplantation and look at #5 in this typical hospital link.
http://www.umm.edu/transplant/kidney/indkidny.htm
It is a tragic set of circumstances. But i assure you that these protocols are there for very specific reasons. Compliance and immunosuppressive drug complications are very serious issues.
And let me get this straight. The guy is a great doctor for three years, and the instant he tells you something you don’t want to hear, you write a chastising story about him and one of the premier institutions in the country? Please. Stop being so selfish. Understand that the decision was made in her best interests by people highly educated in their field, who have have a great deal of experience in the outcome scenarios for high risk surgeries like this then you could ever comprehend.
This just makes me mad! I’m 15 years old and I can’t believe how people STILL act with children that are mentally retarded.
My little brother was born almost 4 months prematurely and has ADD, ADHA, PDD, aspergers, autism and a little bit of downs syndrome because of the medican the doctors used to keep him alive. If you look at him he looks like a perfectly normal kid, just a little slow at learning and a year older than the other kids in his grade, but as soon as people find out all of his problems they judge him.
They don’t know that my little brother, the boy with all of these problems got better grades than I did this last school semester when just last year he failed almost every subject. They don’t know that he remembers everything he sees, that he remembers every single fact he reads in the Ripely’s Believe it or not books. They don’t know that the little boy who weighed 1 pound when he was born will probably grow up and own a company that makes games just because he wants to make the perfect never ending game for himself and his friends.
No one knows what the future holds, and I cannot believe that that doctor could say no to helping your daughter just because she is different. That’s like telling someone that they can’t eat because they are different.
It is heartbreaking to be denied by the hospital. Sometimes we wonder why and how could someone do such things. Often times we think, why can the doctors do anything? Why do they not care? But then I must realize nothing is black and white. Medicine is DEFINITELY not black and white. What that doctor said probably did not contain all the fine details of why he thought your daughter should not receive transplantation; there might be more complications and contraindications than what he is giving you (whether you agree with me or not at the moment).
The best advice that I can give to you is to find other hospitals and other professionals for their opinion; see what they have to say about your daughter. I wish you the best of luck, to you, your family, and to your daughter.
The family has donors, so this is not the issue.
There seems to be 2 threads going here. 1 Why would they not put her on the list? 2 It seems that some people seem to think that her daugher should not qualify due to her challenges.
As to #1 based on what has been stated by the mother the daughter should be put on the list. Nobody is asking to skip the line to the front. It has already been stated that it could be 6-12 months before a transplant is needed.
As to #2 I have had the honor of working with many a person that has been classified as mentally challenged/retarded. There are several levels of this classification and I have seen some of them achieve above and beyond expectations and move on to other jobs outside of the system to “normal” jobs. As for the what happens when the parents are nolonger able to provide day to day care that is what assisted living facilities are for. Who is to say she will never prove the nay sayers wrong. Only the Dr’s and Hospitals that refuse to give her a chance.
God Bless and good luck.
i know all too well about the donation and the exclusion’s because of physical or mental defect I was a Firefighter and we all are registered but even before that i was a registered donor also. several years ago out of the blue i got a letter asking if i was still willing and i replied yes and they said that they needed bone marrow and i said fine and we went through a new physical and when it turned out that since my last donor health update i had developed high blood pressure i was told i was now permanently excluded from being a donor. I then found out last year that the person who needed the bone marrow who i matched was my biological sister who i had not seen or heard from in 27 years and she was dead from bone cancer–and i could not help but wonder if my marrow would have changed that ? it will be a question never answered. but anything o the donor or donee from ever having smoked a cigarette to being a chocaholic will get them bounced from the program the donor and the recipient have to have the MONEY for the procedure and have the MONEY for the lifetime proper care of themselves and MEDICATION to be almost perfect “specimens” of what a human being is otherwise some Doctor from the “Bannana Republic” is going to wag his finger and say NO and claim he understands how hard it is to hear that,meanwhile back where he is from people sell their organs for extra cash and he knows if it was his family member thats where they would go is back to the old country and pay somebody for what they need– I’m sorry to sound like such a Doctor basher i’m usually not, but this pissses me off.
Peace
The lord will be with you and help you on this journey. Things will work out in the end you will be able to fight this and the right choice will be made. Now for someone else post
2. to SecondYearResident your quote on this paragraph “It is a tragic set of circumstances. But i assure you that these protocols are there for very specific reasons. Compliance and immunosuppressive drug complications are very serious issues.” I bet you never even heard of or read about a product called Immunical have you a product that raises your immune system i have seen it do wonders for people who should not be around now or who had no immune system. I am not going to even link my website anyone can find it if they look for it. this doctor should know about it and prescribe it to his patients since its in your medical pharmacist books that you use to prescribe drugs but because you guys don’t get kick backs from the company then you never even tell people about it. Look it up on you tube. this just pisses me off for people who don’t even know the truth to many objects.
I’m not sure I can add anything to what has already been said and 657 posts would be a lot to read.
So, I will simply thank you for raising awareness of this situation, being a voice and wish you a sucessful resolution. http://www.savingdowns.com will stand with you against all forms of discrimination and practices that harm or offend the value of lives of people with genetic conditions.
I, too,hope the Rivera family is successful in their fight. I am not usually a blog reader but this story touched my heart. To those who have left vindictive and heartless comments, shame on you. We should be offering support and prayers for Amelia and her family, their struggle is hard enough without having to read the drivel you spew. Get your jollies elsewhere. And to those who blame the Riveras citing ‘3 years of a fine relationship with this doctor’- read the original blog again…it is clearly stated that the nephrologist who has been treating Amelia is a WOMAN, not the ignorant transplant team doctor who met with the family in the conference room and relayed the teams ‘decision’ with such a cold heart. Amelia deserves this chance at life; the Rivera’s aren’t asking for a kidney – they’ll find one – only the surgeon and the facility to implant it that their child be given a chance to live. They and Amelia deserve nothing less. Godspeed, keep up the fight!
Amelia is a beautiful little girl. You can see so much love and life in her eyes. How dare ANYONE deny her a future!!! I hope you’ve contacted a lawyer. I am absolutely disgusted by the treatment that your family has received. I wish you, your husband Joe, and Amelia all the best in the world and hope that she gets the medical treatment that she is entitled to!
It happens all the time with Doctors. Perhaps it’s their hardness of heart after years of service – who knows? This is an outrage to me but I’m not surprised at this doctors bedside manner. It happened to me years ago with my daughter. I was recommended to the Top Nuerologist in the State of Michigan who, at the time, was the President of the Muscular Dystrophy Association there.
We went for our consultation. After 3 minutes of introduction (in his office) he said he’d looked over the chart and asked if I understood she would not see 5 yrs old. Then he said: “What do you want me to do?”
It was the coldest tone I’d ever heard and the look on his face as he shrugged his shoulders is one I’ll never forget. Needless to say, I picked up my daughter headed to the door, turned around and said: “Not a damn thing! YOU will never touch my child!”
I read in earlier posts people seem to like the pediatricians far more – in my case I agree. Her primary pediatrician was fabulous! I could never say enough for the care he provided her…and me! The hospital she was often in was wonderful, too. I have a large family and, at her funeral there were more doctors and nurses from ward 6 than I had family! It was a most touching thing to see.
God Bless this baby. I’ll keep you all in my prayers. God is the ONLY one to know what ‘quality of life’ these kids will have. And, perhaps their life is to teach the rest of us! My daughter did.
No, she has neither Hep C nor HIV. As I understand it Chrissy was merely making the point in her original post that these serious illnesses are (seemingly) currently given equal weighting to mental capacity in determining whether a patient is an eligible candidate for transplant.
As far as what would happen to her if her parents were to die in an accident, the same goes for any child in a similar situation. As such, this is a null point.
My heart breaks for you. My own family had to deal with this doctor. We were at CHOP for FIFTEEN YEARS, but left solely because of him and his nurse coordinator. We got our kidney at CHOP and transferred to another program IMMEDIATELY where we are now treated with dignity and respect. I’d documented the numerous situations with this doctor and nurse coordinator (not sending requested potential donor info to people, telling my child she would DIE if she didn’t go on dialysis, etc.), but it all fell on deaf ears. I was heartbroken. All the other doctors and staff were exceptional…it was just these two bad seeds.
oh…P.S. – they labeled me “DIFFICULT.” But then again, call me whatever you want. I fought for my child and she is here today, because of it.
There are plenty of transplant hospitals, so do not give up. Where there is life, there is hope. All children are special.
With friendship,
Lisa
My daughter had a heart transplant neary 16 years ago when she was 9 months old, we knew then that she had some learning delays but they still went ahead. She is now, dipite her problems a very happy, full of life young lady, she is most definiatly not a retard. She, like everyone, is entitled to a chance of life.I hope that you can get this decision changed I am thinkgin of you all xx
AJ, did you even read the original post? Chrissy says, and I quote, “We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor”.
I know how these parents feel. I have been through the same situation, only it was 19 years ago. How we dealt with it was my husband (the child’s father)gave her the kidney. She is developmentally delayed but has done very well with her dad’s kidney and has had it for 18.5 years. I would love to talk with this mother, please feel free to contact me.
I believe if this were the child of a famous Actor or sports player it would all be a different outcome . So sad that are system in the U.S.A.is so Judgmental on who you are or what you have . But one thing we do have and they cant take from or not let us use is God .I know some times it is hard to let go of the anger at these people and it doesnt help your case at the time but in the end they are the ones that will have to answer for there wrongs .I will be praying for Amelia and for the Family .Because there is only one vote that really counts in the end .
I feel your pain. 7.5 years ago, our family had a very similar experience. Our disabled daughter, who has Down syndrome was very ill and it had been determined that she needed a heart transplant. We were told by the medical ethicist at a large university teaching hospital that they did not feel that this was an “appropriate use of a limited commodity” Needless to say, we were incensed! We transferred our daughter’s care to Mayo Clinic in Rochester MN. Laura received her heart transplant on June 27th 2005. We just got back from our 6.5 year checkup. She is doing wonderfully! Don’t give up…. but you might want to consider another medical center.
To the family, In your most difficult time, when all seems to fail, remember the words of Our Lord Jesus Christ, ” Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my Yoke is easy and my burden is light.” (Matthew 11:28, NIV) Cast all your cares upon Him because He cares for you.
I am reminded of the words of Our God, when he visited King Solomon in a dream. God said, “Ask for whatever you want me to give you” (I Kings 3:5, NIV) Do this now and watch God move on your behalf. He will open doors that no man can shut. God has set an open door before you. Ask Him what to do and where to go.
I am a firm believer that in life we face challenges that we can overcome. After reading all the posts, I began to wonder if maybe your family was chosen to help change the criteria in who receives a transplant.I am not overly religious, but I do believe we are all here for a reason. Maybe yours is to not only fight for your daughter, but for all children and adults with disabilities, whose voices need to be heard.
So many people do not know how to stand up for themselves and their rights. Bravo to you for not rolling over. I have always believed that with enough research and knowledge we can educate those around us to understand and see things from more than one perspective.
I have had the pleasure of working with children with disabilities and could not imagine any one of them being denied medical care that could save their life because of their disabilities. Hearing your story brought tears to my eyes. As a parent I am outraged.
I wish you much luck in your quest for a kidney transplant for your daughter. At this point the world is watching and you now have the platform. You and your family have a chance to be heard, to make a difference. Make it count
I would recommend that you look into Riley Hospital for Children which is part of the Indiana University Health network (www.iuhealth.org). They are one of the nation’s leading pediatric transplant hospitals and specialize in kidney transplantation as well as liver, small bowel and multiviceral.
Beautifully put, Krystal. Although not a religious person myself, I could not agree more with your sentiment.
My sister was born about 30 years ago with cerebral palsy, and was transfered to the same childrens hospital on life support. The hospital doctors tried to confince my mother to take my sister off life support, saying that she would probablly only live for few years anyway and would probably be mentally challenged. My mother refused and got second opinions from better doctors. They were SO wrong! She is now almost 30years old and holds a Masters Degree in English. Keep trying!!! Dont give up! There will be someone that agrees with you.
Sadness….as mommy to several kiddos who have brain damage and are retarded my heart brakes over this situation. Trust that we are praying for you and your beautiful and valuable daughter here in Minnesota.
@n.stinker
Mentally retarded is a perfectly fine term to use. That is the medical condition is why she has and that is an approved medical term. There is no shame is using the word retarded. It means slow or less advanced for your age. That is an accurate definition of the condition.
We don’t need to sugar coat every word we use. In medical communities we need concrete words to describe conditions.
First of all, this is unbelievable, since when is it that a physician should tell us not to do ALL we can for our children?? Follow your heart and follow your faith.
And to Brandon: You say “the cons of society burdening the cost and labors of her medical care do outweigh the pros”… Oh but it’s alright for us to take care of murderers and rapest? You want to talk about a burden!
I, too, am outraged! This is yet another example of the “throw away” society we have become. If we can not burden ourselves for a child, what can we burden ourselves about?
I take your point, Peter. Worth bearing in mind, however, usage varies from region to region. In the UK for example, where I live, the terms ‘retarded’ or ‘mentally retarded’ are not, and never have been, acceptable. That’s not to say we haven’t worked our way through our own fair share of rather grotesque terminology over the years when it comes to putting labels on people. But the currently accepted catch-all term in the UK for any condition manifesting itself in some level of cognitive delay is ‘learning disability’, and most people seem fairly happy with this. This differs to North America, where the same term refers to someone having a disorder that affects specific academic and functional skills and, according to Wikipedia at least, a person’s IQ must be average or above to be diagnosed as having a learning disability or learning disorder in the US. A typical example of this might be something like dyslexia.
Does not surprise me. Doctors have been killing babies healthy or not for years.Every thing goes back to the morals of human beings. How did all humans get here through their mothers, she could have made the decision to kill them but the God fearing mothers chose otherwise. Doctors many of them are think they are so intelligent but they are not,many are foolish! I bet if these people that run that particular hospital and the so called doctors had a daughter like Amelia they would want others to bend over backwards to help their family. This doctor’s name should be known publicly and no one should visit this hospital. They want the money and money talks, people should find another doctors that are God fearing and respect the santity of life, in or out the womb. It’s time people everywhere stand up to these Godless instutitutions they’re all about money.
Secondyearresident:
How can you think they are being selfish? All the want is for their daughter to live a good life. I do not think that they are being selfish at all. I would do the same for my child.
Growing up with a brother who was handicap my parents were told several horrible things by “medical professionals” over the years. One doctor told my Mom to stop feeding him because it was prolonging his life……stop FEEDING him! Another said to put him in a home and forget they had him. And when he developed pneumonia they didn’t want to medicate him because it would prolong his life. My parents had to fight every step for him. He had no voice and they had to be it. Stay strong, KEEP FIGHTING. She deserves every ounce of fight you have inside you.
That “doctor” is despicable.
This sickens me to the point of no return! Who are we to play god? Who are we to determin who has the right to live? Everybody and everything deserves the right to live life to the fullest they are capable of doing! I sit here with my 2 year old son, who was at st chris, and he was a 27 weeker. He is delayed, and if anyone ever told me that because of my sons mentality he could not be saced, id be in jail! All children jave the right to live. I would look into other places, they dont deserve the air they breath to put your family through this! I pray for you and your daughter and may god be with you!
This story is indeed disgusting and horrific. Completely unfair and ridiculous. I shared the story to help spread the word, but…
I do wish that the mother hadn’t felt the need to include the colour of the Dr.s face in the story. Don’t see the need to mention how it was brown.
I to have a son that is kinda slow. with learning disabilities. We have a hugh Blood Drive in our town each year. and he was not allowed to give blood because of this. this really blew my mind. so i have not given blood since then. oh yea Red Cross was the one doing the blood drive.
This makes me angry and sick to my stomach how the doctor and social worker are treating the family and this little girl. If the Rivera family is at all interested, Medical University of South Carolina Children’s Hospital is interested in hearing from you. They are willing to hear your story. From an MUSC Children’s Hospital employee left me the following information for the Rivera family, “To protect the child’s privacy and that of her family, we’d need to hear from them directly. A legal guardian is welcome to contact the Department of Pediatrics’ Transplant Center at 843.792.3876. For your reference, a link to the department is here: http://​clinicaldepartments.musc.ed​u/pediatrics/. We hope this information helps you and thank you for thinking of us.
Please don’t give up. Even if you aren’t willing to drive to SC, at least give them a call and see what they have to say. I’ll continue to pray for answers, Amelia’s health and the courage to strive harder for her daily.
I would like you to clarify.
They won’t allow her the kidney from a waiting list? Or they won’t do the procedure EVEN IF YOU FIND ONE?
Also, was Hep C just on the list or does she have it?
Please clarify.
I am HCV positive but very healty, with a ZERO viral load count from Day 1 which means I cleared it or never had it. However, the antibody test shows positive so if she is HCV positive, they might let another HCV positive (again, just the antibody test) person donate. I would be willing to be tested as a potential match for a donor.
With this reasoning, why waste food or water on a “mentally retarded” child? (And NO, I am not serious AT ALL.)
I wonder—will they soon make IQ testing part of the requirement to receive an organ?
So many told us to abort our child when we learned at 22 weeks gestation that he had Spina Bifida and hydrocephalus. The advance notice provided us enough time to secure the best medical care. Despite dire predictions from the medical community, he has thrived. Yes, his “normal” is different from so-called typical children, but he would rate his quality of life as high. How dare the medical establishment withhold care based on their judgement of quality of life? Amelia, our prayers are with you and your family.
Disturbed, troubled, distressed and pissed? Yes, all of the above! May God bless you and your family,especially Ameila.
I have a family member who is an alcoholic but received a liver transplant – yes, from the organ donor list. He’s now back on the bottle and squandering his 2nd chance at life. THAT is wasting a transplant.
How can this doctor, in essence, accuse you of “wasting” medical technology on an innocent child that you love and care for? It is patently unfair and has a sickening whiff of eugenics about it.
@Chris they won’t do the procedure period. Also the reason those other diseases were mentioned is because they are on a list of thing that prevent a transplant procedure. The ones Amelia has were the ones highlighted, not the ones mentioned.
Absolutely appauled by this story. In 2002 my son had a sm bowel, liver, and pancreas transplant. But at birth he had a stroke or what you cerebral palsy. We had many tests to determine elgibility but mainly based on the rare tumor in his intestine. I pray that you found a different institution to take your daughter to. UNIVERSITY OF NEBRASKA OMAHA IS WHERE WE WENT. And we live in michigan.
This is not unusual. This is the eugenics mindset in our country. If this is a surprise to you, it is only because you have not been paying attention. It has existed forever but was legitimized with the Eugenics movement of the early 20th century and then into Margaret Sanger and Planned Parenthood, Hitler and the death camps, the eugenics sterilizations of the 40s -60s, the legalization of abortion, and into the present day of “ethicists” like Peter Singer, a bioethicist at Princeton, who said, “killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living,” or “the life of a newborn is of less value than the life of a pig, a dog, or a chimpanzee.”
Daily, thousands of disabled babies are killed by abortion. Daily. 90% of Downs babies are never born. American society wants to convince itself that only pretty and perfect counts. No troubles allowed. So we barely tolerate children who are less than ‘perfect’. Meanwhile, we make sure that they get no transplants, oh, no. That would not be utilitarian. That would not be a good use of resources. That would not give people who were ‘whole’ a good chance.
Amelia’s mom and dad are GREAT advocates. They know what many don’t want to. The value of a human life is not in performance but in existence.
FYL, this man, John Knight, writes a great blog on disabilities: http://www.desiringgod.org/blog/authors/john-knight
SHAME on CHOP!!!!! Our 22 year old son had a kidney transplant in 1998 and this was NEVER even discussed. We had His done as Childrens Hospital of Colorado!!! HE has Trisomy 8 Mosaicism with agenisis of the corpus callosum. His only possible cause for not having the transplant was his bladder was not working. Once the surgery to fix that was over he was fine and there was enver in discussion or doubt after that. Stand strong against these doctors and sue the pants off them while you are at. This is discrimination at its worst!!! We will pray for your family. Please feel free to contact me if you would like support or more info. Meg Day, Aurora, CO email: familyday@comcast.net
Do you have a Catholic hospital anywhere near you? No Catholic hospital I know of would reject your case (if they did, they would likely get into huge trouble with their bishop) and, of course, you do not have to be Catholic to use a Catholic hospital.
As a Nana to a grandson with Down Syndrome, a mom and therapist, I am absolutely appalled at the discrimination shown by the social worker and the physician you had to deal with. I can’t believe this type of attitude exists in this day and age. I’m not a violent person, but I think that if I had been in that conference room that day, I would have jumped across that table and my fist would have met with the nose of two people! I applaud the fact that you do your research and are ready to do whatever it takes to give your daughter the best life that she can have. I pray for a quick and miraculous solution to this situation. God Bless You and your family. Don’t ever stop fighting for what’s best for your daughter!
Blatant discrimination…..SHAME ON YOU CHOP!!!!!
Thoughts and Prayers for you and your family. I can’t make a donation at this time, but would be able to help you set up a fundrasier that I donate all my commission to your family. Kennedyerin1981gmail.com
i hate doctors with there bullshit my grandmother went threw something similar she was at cooper hospital in camden , new jersey and was told she was 95 brain dead and would never wake up well two weerks later sat up and was cursing at all the nurses,remember they are not god
I’m disabled and I find this to be typical of the medical profession. I think a lot of doctors loose their hearts along the way but instead of saving lives they take lives. The government and the medical community are hand and hand so that means more children and adults will suffer. I hope everything gets better for you and Amelia. God Bless you.
CHOP saved my life when my local hospitals threw their hands to god. CHOP is the best hospital standing. The doctors and nurses do wonders. The hospital would not just deny a child life. Unfortunatle there are not enough organ donors. CHOP would not just destroy it’s foundation. Hope lives in CHOP. So do not blame the hospital that saved your child in the first place. In order to get more success stories,
BECOME AN ORGAN DONOR
♥ God Bless
I am just sickened by this. We have a daughter w/ quad CP and we live in Singapore and Malaysia. Though the culture here, in general, is very closed to folks w/ disabilities, we have NEVER experienced any issues w/ medical care. Singapore is a money driven society and money buys all, regardless of ethnicity (our children are African), ability, looks, condition, etc. Just wanted to let you know that though it’s far, the medical care here is far superior to that in the states. People come here from all over to have medical procedures done, etc.
Praying you are able to fight thru the crap there, but if not, there are other options. And Singapore accepts a wide range of health insurances! I was hospitalized here for 10 days w/ all kinds of scans and procedures and my total bill for VIP treatment in the hospital, all meals, etc, AND a room for my family (we were living in Bali at the time and flown to Singapore on a medical evacuation), was $8000. US. Just thought I’d throw that out there. Keep my email in your back pocket if ever you need it. We have a flat here in Sing too!
Listen up people, and listen good.
When you, or your children, are born into this world, nobody is there waiting to sign a contract in your (or your child’s) behalf that states you or they are entitled to the best healthcare, or access to any and all transplants needed. Those things are precious resources afforded to few by the hard work and dedication of doctors, nurses, and scientists who bear zero responsibility to you or your child. And because it is a LIMITED resource, not everyone can receive it. That’s just the definition of a limited resource. It’s easy to sit back in your chair and whine that such a resource should be available to everyone without regards to cost or quality of life, but when you have done absolutely nothing to produce or provide that limited resource, your whining can be equated to welfare and the occupy movement: “Where’s my handout?” you say.
Entitlement. We’ve attributed it to Generation Y, but this just goes to show they learned it from somebody.
I for one hope that this story ends in a determined mother
This will come home to all involved in trying to keep this precious child from getting the help that she needs to make her healthy. I had a child that was handicapped both physically and mentally. She was and is a child of God he loved her as we her family did. She is now in Heaven with the Lord that loaned her to us for almost 23 years.
I have found CHOP to be a horrible hospital….When I was pregnant with my twins they wanted me to abort both of them because one had clubbed feet and the other one has transposition of the great vessels and told me she would have no quality of life…..I broke down in tears….however a few weeks later i got a call from a dr in syracuse ny telling me that i was one of the most common heart defects there are…..Kaytlyne is now 2 1/2 years old and has not had any heart related problems….so i personally would NEVER recomend chop to anyone….upstate medical university and crouse hospitals in syracuse ny are absolutely amazing
They aren’t looking for a donor. Please reread the article.
Kevin, I think the intent of the person offering to be tested was just a wonderful gesture of support, to say, “I think your daughter’s life is worth saving and I would give her my kidney if I could!”. As would I!
And I wonder if there is a way to do that? Is there a way to start a donor list specifically for people with mental challenges, “MR”. (ugh!), as they are called? I know there are many like myself who are unaware that this going on and would jump at the chance to be able to help a family like yours!
Your daughter is and will always be in my prayers.She is one of Gods childern and all his childern desirve the same treatment.God bless you and your husband in your fight for life for Mia. And God please forgive the doctor and hospital for being unhuman and not caring for all life.
John McKenna
This is very sad. I understand that you are furious and upset- as well you should be. But please understand that you can be firm and forceful without acting uncontrolled.
Plus, you claim discrimination against your child with special needs however you describe the physical features of the doctor precisely but not the social worker…
I know that sounds unimportant in the light of your situation, but please remember you will be more successful in saving your child’s life if you have a level head in which to advocate for her.
Also, I know its insulting but for something this important- please considering going somewhere else. If CHOP hand is forced, do you think they will do their best job during the operation? I know you’d feel good if they had to eat their words and do it, but the most important thing is not who does it or where, but that it gets done!
Godspeed.
Thank you Leah. There is a great opportunity here to make a bigger change. We’re thinking through what we need to do to make this change and we hope to have that figured out shortly. Thank you so much for your support.
This is such a heartbreaking story! Steve Jobs got a liver transplant and he had terminal cancer with a very short life expectancy. Whoever says money can’t buy a transplant should explain Steve Jobs transplant.
This breaks my heart and I will share it on my blog tomorrow.
Sadly this is being told to many people across our nation. It is one of the 1st steps in socialism. The 1st to go will be the weak n the disabled and the ill. It is horrifically wrong! Praying God opens doors to help this sweet little girl. Noone should have to hear those words from Dr’s and social workers.
Okay, it’s reading comprehension time, folks. The article is explicit: they aren’t looking to be put on the organ donation list. Even if they were, that would not be an excuse for the heartless attitude this doctor seems to have taken with them, but they aren’t. The family is willing to donate. The doctor is saying “Even if you had a kidney right here and now, I wouldn’t put it in her; better she die now than live a while longer because we’ve decided her standard of living is not worth extending.”
This is an unbearably wicked position for anyone, let alone a medical professional, to take, and the fact we have people trying to defend it is all the more saddening. How can anyone look at this family and not pity them, not feel the anger and frustration of a mother told, sorry, your kid’s life isn’t worth any effort? Human life is not a commodity, to be dismissed on a whim or because of “resources,” and God help us the day this becomes how most people view the lives of others.
Stories like this are repeated in medical ethics classes to explain why arguments based on utilitarianism are flawed. Someone in policy feels that being ‘mentally retarded’ gives one less right to live than being normal. Hence, when told to weigh resources against saving this girl, or not saving this girl, those in charge are assigning a dollar value to the life of each person they save, and attempting to come to a utilitarian solution to health care. Completely barbaric in my opinion.
All I can say is that obviously RACISM and DISCRIMINATION still are very prevelent in our society! How could anyone read this and not feel that way? This is WRONG and makes me think of the Nazi’s and WWII! Maybe that’s a bit extreme but so is this situation! This makes me just SICK!!!
My heart is breaking for your family! This is so incredibly wrong. Please tell me what we can do to help. We will be praying for you!!
I am sending many prayers your way. I stopped everything to read your post and couldnt stop reading. It sickens me that any human Doctor or not could say the things you were told. In life we have to put ourselves in the shoes of others. Could they possibly treat their own children this way? Everyone has the right to live!! 4 years ago after an ectopic pregnancy that almost killed me I was told directly after surgery that I could not & should not have another child. I will NEVER forget the words from the surgeon. Here I lay with my 3 year old daughter beside me! I overcome all, battled with Invitro and we produced a beauty little girl who the dr said I should not have attempted to have. We know in our heart what is RIGHT for us. Keep fighting Stay Strong.. You have ALL of my support. Your daughter deserves the world!
Oh my gosh… I would have wanted to strangle that doctor. He has no right to the title or profession. Poor little Amelia… you guys will be in my prayers! :'(
Recent article in New Eng Journ Med. Similair issue is raised.
http://www.nejm.org/doi/full/10.1056/NEJMc1111134
I am appalled for you and Amelia and have signed the online petition. This is the line that actually cracked me up, ““I have been warned about you. About how involved you and your famliy are with Amelia.” Really? As if being involved in your child’s life is a bad thing? I am a school counselor and I wish all parents were involved in their child’s life and well being. God bless you all and I hope to read about a successful transplant soon!
Have you been able to find a match? I would be happy to be tested to see if i’m a match. This is crazy to me. We just started using CHOP again after many many years and they seemed to have taken good care of my Daughter (Hiatel Hernia and GERD) but i am now outraged by this and am considering going back to A.I. Dupont. Please let us know if we can do anything. Feel free to email me if you want me to get tested…Kristenmj1981@verizon.net
You are in our prayers!
Kristen
I don’t know all of you…but I am CHEERING FOR ALL OF YOU and praying for a positive outcome with all that I have…Love Nadine
I don’t recall the name of the person who commented above about it, but I agree that at this point, I would not want to force the hand of that hospital to do the operation. It is apparent that those who make the decisions there do not see your daughter’s life as valuable at all (such a sick and twisted thing too). I wouldn’t trust them to do a decent job of the surgery should you be able to manage a court order for it even.
I am sure that there are hospitals out there who would not only offer their services for Amelia’s surgery, but would do so with the love and care that she so deserves from the hospital staff. Have you contacted organizations for children that have the condition she does? Maybe they would have resources to not only help you find a doctor/hospital/social worker even that would give your daughter quality care but also be able to provide you with legal assistance.
I personally feel that those people you spoke with should be charged with something. I’m sure that right now, your highest priority is getting Amelia the care she needs, but once you have that taken care of that, I would definitely speak with someone about holding them responsible for their actions. It is all so wrong, what they are doing.
I will share your story, on all of the social media sites I peruse as well as on my blog. I hope it helps.
I am so angry and almost speechless after reading this post! I can not believe that a doctor would sit and look at you in the eyes and tell you that your child could not have the transplant that would save her life! Regardless of her mental condition! Isn’t that what they become doctors for TO SAVE LIVES!! I am outraged and disgusted! I guarantee if it was there child in the same situation they would do everything in there power to save their lives and to help them! I am so sorry for what you and your family are having to go through… really very sorry! I thought we were supposed to live in a time where medicine was so advanced and we were saving more lives than centuries ago? What good is any of the knowledge and experience if we have doctors like the ones you’ve dealt with. They should be so ashamed of themselves! Doctors are not God, and in my opinion they are doing a job that He is allowing them to do and with the brain that He gave them! I am sharing this post on facebook and twitter and anywhere else I can find a place to share it! I wish your daughter and your family well! Don’t give up hope that there is a hospital and doctors somewhere that will think enough of ‘life & humanity’ to allow your daughter to go on living hers.
As a mom of 4 children with autism, I find this horrifying but not at all surprising. Unfortunately, this kinda stuff happens all the time–the attitudes in the medical community that had parents locking ‘lost-cause’ children in institutions and attics are still prevalent. Doctors who are still practicing where taught by the doctors that advised it–we are not even a generation away from these notions. From my own experience, I know I have heard doctors and professionals actually cite NAZI-party ‘Autism research’ that was ‘conducted’ during WWII, telling me that I caused my children’s ‘deficiencies.’ I mean really? REALLY? In the last five years, if ever, this is being cited as medically reliable, conlusive information? Sounds like your doctor and my former MDs were probably study buddies during the Nazi 101 course at med school. I’ll be passing this along. I hope others do…not just for your little girl, but for all the families that are hearing this kinda ‘news’ everyday.
Sending love and hugs to Amelia and her family, keep strong, I am sure there must be a different hospital and specialists who will carry out this procedure. Such a shame there is still so much prejudice in the world. I have three children with disabilities and would give my life to save theirs so I can empathise with your shock and disbelief xxx
What can we do about this? Is there an address you might provide where we could write and protest? Perhaps the hospital and the name of that committee? Please let us know.
Who gave a doctor and a social worker the right to determine this case ,this sounds rather inhuman and very wrong since the child needs to have some hope and future while the parents are still able to seek for her good. I would wonder about discrimination litigation or a court order that they cannot be refused the transplant based on a purported MR diagnosis, then i think may be God will hear moms prayers and give a path to a second opinion…
The most responsible thing for Amelia’s parents to do at this point is to release Amelia’s medical information so a real discussion can ensue. I have read that children with this syndrome can have heart problems and immune system problems. Does Amelia have other complicating medical issues that coincide with her genetic syndrome? They should certainly be factored into the decision for transplant. The public however is not fully informed on Amelia’s individual condition. The parents could change that if they wanted to. The blog entry did, however, mention the doctor’s physical characteristics and accent. You can find out who he is just by looking on the chop kidney transplant website. He was thrown under the bus. It is a very sad situation for the family. But the public does not have all the facts due to patient privacy laws. If the family wanted to make this issue truly transparent and release her records, they could.
I read this, and I cried. I am being worked up for the transplant list as I need a kidney. My hospital is very good to me, and they have made me jump thru many hoops..all which I have done willingly. I think that constraints are put in place to prevent kidneys from being wasted..not that putting it in this child would be a waste, but they want to make sure that each kidney that is placed is taken care of to the highest level. If this family had a plan in place of who would make sure this precious little girl took her anti rejection meds for the rest of her life, then I think the hospital might reconsider. I had to prove I have a good support system in place before they would agree to transplant me. They are also checking to make sure I don’t have 2 birth defects that rubella babies usually have…if I have 1 they will still be able to transplant…if I have the other, they will not. While this is troublesome to me, I completely understand…
For all the haters posting on here, shame on you! This is a family in crisis, let’s not forget that. To the family, I am going to email the hospital and express my feelings. If you are willing to donate the kidney and pay the bill, there is NO REASON they should not go forward with the transplant. PERIOD. To the person that suggested more info is missing and the family could release it if they wanted to, sorry but I disagree. This sweet girl has a right to her privacy. To the person who suggested that we are ENTITLED to medical care, my response, “are you smoking something???” YOU listen. If this family is willing to PAY for the surgery and the ONLY reason the surgery is being denied is because of the child’s developmental delays, then that is discrimination. That’s akin to denying her on the basis of skin color if she were black or brown, etc., or denying her if she were homosexual. In 2012, that should not be happening at all.
To the mom: KEEP UP THE GOOD FIGHT! If someone said this to me, I’d be all over them like you are. I am “involved” like you in my children’s health and care. God bless you all!
I’m outraged that any ‘doctor and social worker’ can act so egregiously. I’m incensed that the doctor said he was “warned about you and how closed involved you and your family are with Amelia.” Of course any responsible parent is going to be involved in the health care of their child or any family member they care about. It seems to me that some members of the medical community are threatened by informed patients and their family members. The doctor’s and social workers attitude is clearly unethical. How dare they!
How cruel can they be esp. with the parents saying they will donate or have more family who would . This child is a lovely little girl and deserves to live just as all of us do . Have you tried alternative med and such ? Might be worth a shot check out http://www.Hacres.com . Sending prayers your way and too bad you didnt record what the doc and social worker said as this isnt right and maybe something can be done ?
Our 20 mos old daughter, Alex, died about a month ago after spending this past summer at CHOP. We had a similar experience. Our daughter did not receive a transplant. CHOP told us that there was a variety of factors that went into their decision making but that they did not have a standard set method for making their transplant decisions in the pediatric nephrology department.
This is an issue with dialysis also. Our local nephrologist, Dr. Bunchman at MCV, medical college of virginia, said that he would not allow our daughter dialysis because she had mitochondrial disease around March of 2011. CHOP DID allow her to be on dialysis without question and she lived about 9 more months, or about half of life longer, with good quality of life, because of CHOP’s excellent decision making and wonderful medical skill.
Please feel free to contact me if we can be of any assistance with this flawed and inadequately developed area of medicine.
We wish you the very best with your daughter.
I wish peace and strength upon this family. I do know that doctors aren’t always adept at delivering bad news, perhaps they may over-simplify or perhaps they may make the issue more complicated than it has to be. There are medical reasons why a person may not be a candidate for transplant. We just don’t know, in this case, if Amelia has other medical issues that do not make her a good candidate for transplant. The anti-rejection drugs, which are taken for the rest of the organ recipient’s life, are very powerful immunosuppressants and leave the person vulnerable to infection. There are so many things that are not addressed – this complex medical decision has been way over-simplified in the blog. But that may have been a result of the doctor over-simplifying as he spoke with the family and gave his opinion. It is true Amelia is entitled to her privacy. That also means we just don’t know all the facts so let’s leave the judgement out. Again I wish peace hope and strength for the family.
Let me put it to you this way…my daughter will be 33 in April. She functions at a 5 month level. She is 42 pounds (proportionate for her height which is a little over 4 foot). You can just imagine what I have been through in all these years!!! I had her evaluated at CHOP in Philadelphia originally. Couldn’t get her in until she was 17 months old because she wasn’t “sick” and this was “just an evaluation”. All of her testing was normal (no brain damange, no blood or any other abnormalities) except she had delayed development. Originally she was diagnosed with Benign Congenital Hypotonia at 8 months old because her gross motor function was delayed. There was little written about this and it usually works its way out by age 5. At another hospital in Philadelphia, no longer there now,I was asked at one point to have her admitted to “catagorize” her. I was told she was malnurished and was sent a nutritionist to talk with me. Never was I asked what she ate or how much. So many stories come flooding back. I was told by a nun that she was TOO RETARDED TO RECEIVE COMMUNION AND THAT “THOSE” KIDS COULDN’T BE PART OF THE MASS BECAUSE THEIR WHEELCHAIRS AND CRUTCHES “HELD UP THE PROCESSION”. (you KNOW she received communion – I had my OWN mass with several HUNDRED people and the Archbishop behind me) She now has a good quality of life only because I WORKED MY BUTT OFF TO GET IT!!! And, with the state of the economy, my deteriorating health I’m not sure what the future holds. Don’t think for a moment that this will be the only criteria to deny organs – hopefully you won’t be “middle aged” and an organ is denied because they’re only for the younger population so they can get a longer life out of them or some other scenario!!! I had hoped we as the human race had come further along by now…
Please go to http://www.kidneyregistry.org.
Godspeed
I just wanted to say I am appalled at this treatment of your daughter, and I hope she gets her transplant, no matter what hospital it may be at. WHO are they to play God and determine she has no quality of life!! And the thing I wanted to say most of all is, look at her eyes, they are absolutely gorgeous and bewitching, and she is beautiful child. She also looks like she has quite a bit of spirit in her, she could be fiesty when she wants to be!! Good luck!
I am glad this story is getting some attention. Perhaps your girl will get the necessary treatment now. My thoughts and prayers are with you.
Just WRONG-Appalled by the treatment you have recieved. I have worked with special services and am shocked that the language used by CHOP and the insensitivity of it all. I understand that there are restrictions and or conditions regarding transplants,and blessed are those that donate and recieve but the way this was presented is offensive, and comes off as disriminatory. It is so offensive I think I would consider suing CHOP for the remarks and treatment recieved by the doctor and social worker. I agree with Mary’s comments above; KEEP UP THE GOOD FIGHT – God’s Peace
To the people that are outraged… it’s better to look at it as a decision between two people regarding life and death, rather than one. The hospital doesn’t want Amelia to die, what it wants is that between two sick individuals that the one who can use the kidney fullest does so. That decision necesitates that one of them not recieve it, and that they die. But that isn’t the primary motivation for the decision. No one wants Amelia to die.
Curious what the doctor’s ethnicity has to do with ANYTHING.
IMO I think the point of disclosing the doctor’s nationality is to let the reader know that it was hard to understand what it is he was trying to say. His accent was strong and in a stressful and emotional state.. it makes it that much harder to understand what someone is trying to say. People that work with him on a daily basis is used to his speech by now, but for intermittent contact or conversations it is really difficult and frustrating to say the least for the other person.
The doctor told the parents their little girl won’t get a kidney “because she is mentally retarded.” That’s the highly intelligent deciding that a little girl, who is not intelligent, doesn’t deserve to live. I’ll bet her little heart is far more warm and caring than his.
No one should be told their life is worthless because they are disabled.
Where are you going to stop, Doc? Why stop at how smart a little girl is? Using your logic, when you deny a kidney to a little girl who isn’t smart, then when will you deny deaf people the right to live too? They can’t hear as well as you can. Deny the blind – can’t see like you can. Deny those with diabetes, they can’t regulate their blood sugar as well as you. Deny those with heart disease – their cardiovascular system doesn’t work as well as yours.
You shouldn’t be practicing medicine. How’d you like it if someone else decided you should be denied whatever medical help you will, someday, need because of your hardness of heart?
We all know what the Germans did in WWII. You deny medical care to a little girl who is not smart, doc, how’d you like it if you were denied medical care one day because of your ethnicity?
People either deserve dignity and respect and medical care simply because they exist, or you are acting exactly like the Germans in WWII and Dr. Josef Mengele.
In reply to; Anonymous,
The Human race had come further along, until B. Obama started taking us back to the stone ages. We had a few problems with Bush but for the most part people were working, they weren’t bickering as much, race was almost a non-issue, and we didn’t have to worry about whether our healthcare would actually be the end of us. Remember what people used to say; Be careful what you wish for! Well now they have government healthcare, and it might just be the last thing they ever see. Lights out!
My heart goes out to this family.
Sadly this is an indictment on our politicians and those who elected them. No morals, no ethics, no value on human life. This is a statement of what happens under socialism, and shows just how much the democratic party has been taken over by socialists.
But never fear, billions more tax payer dollars will be given away to campaign contributors so the corruption in our government will be saved.
Dear Lord this is just wrong. I pray that something is done about the way people are treated. No one is perfect.
When I was born I had a first cousin that was born with an affliction that she could not do anything for her self, her mother and my grandmother took care of her fed her bath her, for 21 years, they did what any good Christian would do , No one but God has any right to take your life, Aldo we live in a violent world it’s no wonder that this is happening, Doctors take an oath to save life not take it, This is what we get when The antichrist takes over the world, Death smiles at everyone Christan’s smile back.
Carolina123 you are about as cold a human as I have run across in a six decade lifetime. You should be setting beside the “good” doctor and giving your opinion to already heartbroken parents. What if it were your child? No person has the right or ability to judge anothers “quality of life” or worth. This child is God’s child just as you are, her parents, myself indeed all of us. As such this child is as valuable as the doctor, the social worker, you or I. Probably more so because she is the only innocent in the whole lousy deal. May God bless you, hold you and surrond you with his love and perfect peace. I am outraged! Who the hell are these people to decide this child’s fate.
The doctor stated simply that the reason for blocking the transplant was because of her mental handicap *not* other medical complications. This is what this is about. Is it right to discriminate on that basis.
There must always be room for HOPE. Life is precious. God is in charge. Human beings are not equipped to make life and death decisions in this way. First come, first serve; ALL likfe is important whether Eistein or Little Unknown.
Well, this is interesting. I saw this coming about 35 years ago when transplants were starting to become common and doctors decided they could be like Dr Frankenstein and transplant human organs from one human being to another. I used to discuss this with my coworkers back then. I said no transplants should ever be done because they were far too expensive and unenquitably administered. They all looked at me like I was a lunatic. Of course, I am not in the medical field so my opinion isn’t worth a dime. I have always believed that we are born with what God wanted us to have and that its the luck of the draw.
But having said all that, because we are performing transplants and it is a common occurence, no one on earth should have the power to decide life and death. This baby should have a transplant immediately and Damn the Consequences! If we are going to do these operations, we darn sure better do them right!
And if it was my kid they were talking about, I sure would not be sobbing in the corner. That doctor and social worker would be in the emergency room right now, probably needing some sort of a transplant themselves. Good luck to you and fight your ass off!
78657
The choice of life or death is extremely sensative. How to make a painful decision?? We have to make some, we have to pray a lot, and then we have to follow through with faith. When a family is willing and able to shoulder the financial cost that relieves a lot of pressure. Different facilities have different guidelines. It may take looking for just the right providers. please don’t condemn medical providers who maintain guide-lines that you don’t like. Look for others. I remember when a very famous pro ball player was in need of a kidney and liver but was a heavy consumer of alcohol. HE WAS DENIED by all providers and he died. Why?, a judgement call by doctors that realized he would just drink up another chance. My sympathies to you folks, Keep on trying.
I totally understand the parents and their dilemma. No one has a crystal ball to look into the future and see what each of us could or will be. Like these parents I have a child with a rare disease who has been told that she has outlived her life expectancy. She too needs a transplant and we have waited 20 years for that miracle. But no one ever thought my child would survive or do all that she does. So I think that there is risk with any transplant no matter who the patient is or their mental capacity. But how can we know what joys and contributions this child will bring? We will never know if she doesn’t get the chance to live. Colette
What a difficult situation! Unfortunately there are just not enough kidneys to go around, not everyone who needs one gets one, and they decide to do this surgery based on expected life span and quality of life after the procedure. Yes, she does have a donor available, (lucky girl!) but what about all the expense and resources needed for the procedure? What about all the other otherwise healthy children who can’t get a kidney?
Most Down’s syndrome patients used to live only to age 25-30 no matter what, but this is changing now with improved care. I’d say the transplant guidelines should be updated to reflect this change. But we also don’t really know the whole story here either. Many Down’s patients have multiple health problems and will die from one of them at a young age no matter what. It’s impossible to tell in this case unless we know more, at the same time I understand the mother’s desire to protect her child and fight for her no matter what.
EVERYONE should be an organ donor, this would help these situations, and guidelines should be based on life/health expectancy, not just mental ability. Many mentally retarded people lead happy, meaningful and productive lives. How many of us can say that? Eventually if she stays healthy she will probably be living in a sheltered living facility, (I work in such a place) and staff there could be in charge of her medications. UNLESS she has some other severe medical condition or problem that would compromise her recovery or prognosis, I say she should get the kidney!
This is only the tip of the iceberg if Obamacare is fully implimented with it’s death squads! My prayers and best wishes go out to you and yours.
I am just sickend to death that they would tell you your daughter is not a good canidate because she is mentally retarded.I cannot believe this hospital can refuse her any body parts she is a beautiful HUMAN BEING That GOD created ….I will keep you all in my prayers that your beautiful little girl will get her transplant .
I would encourage the parents to come to Omaha Nebraska for this little girl. There are some outstanding facilities here in Nebraska and I doubt that this family would be treated that way here. There is an excellent children’s hospital in Omaha as well as Creighton University and University of Nebraska Medical centers as well as several private specialty hospitals and clinics in the area. I know it wouldn’t be easy for them to do this, but it is a possible solution.
The definition of discrimination: “occurs when a person, or group of people, is treated less favourably than another person or group because of a particular characteristic, including race, colour, age, national or ethnic origin, sex, pregnancy or marital status, disability, HIV status, transgender status, or any other characteristic which is a prohibited ground of discrimination under federal or state discrimination legislation.
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I think not operating or treating Ameila falls into this category. She is a human being and life is very precious. Small minded people who think people with intellcigcal disabilities have no quality of life. I ask any of those people who agree with the Doctor to go to any Special Olympic’s Function around the world and listen to them speak about how wonder, full filled and special their lives are. Shame on you Mr Doctor and Social Worker.
I am so sorry for all the pain this situation has caused you. Reading this as a nursing student has reinforced my desire to fight for patients like this and help them get the care and treatment that they need and deserve. I hope that everything works out for you and that Amelia gets this transplant. You are in my prayers!
This is a story that is a total nightmare for anyone that has a special needs child or person in their life. I hope and pray that the family can find a Dr and hospital that will help them out, and hope it will be free or at a great discount for the way this family has been treated! No human being should be treated this way! I don’t see how that Dr and Social Worker can sleep at night the way they treat people and have a part in allowing a child to die like this, these are true Nazis.
Please let us know if there is any updates on this, hoping and praying for a miracle.
My heart goes out to this family and especially Amelia. I know you have a right to privacy but I URGE the family to take this to anyone and everyone who will listen to them, including the media. This needs to be out in public so we all know what is going on. This is only the begining of us hearing about these death panels. The more information the public is given the more power we have to repeal and elimate death panels and this type of medical socialism. God Bless this family and God Bless Amelia!!! Please pray for them throught this battle for LIFE!
My heart goes out to this family and especially Amelia. I know you have a right to privacy but I URGE the family to take this to anyone and everyone who will listen to them, including the media. This needs to be out in public so we all know what is going on. This is only the begining of us hearing about these death panels. The more information the public is given the more power we have to repeal and elimate death panels and this type of medical socialism. God Bless this family and God Bless Amelia!!! Please pray for them through this battle for LIFE!
This is truly a sad situation for humanity.
Gratefully we have a God who loves each one of us and for children like Amelia they don’t need communion because God knows what the situation is and she and others will always be welcome in His heart.
Pray in faith that justice will be done for Amelia, her family and others with this problem.
May God bless those that care with abundant peace and love.
I applaud your gusto lady! This is one sick system. I hope you find an easy answer soon. If not, Take your precious daughter and cruise quickly to another country! Dominican Republic! Thailand! Anywhere! You can get a transplant there, especially if you figure out the donor!
Thailand is beautiful. well known for excellent medical care at reasonable prices. We are U.S. citizens living in Beijing China, and many expats go there for surgeries and treatments.
good luck and G-d Bless you all
Can’t wait until Obama’s family may be diagnosed with something serious. Will they get an exception? Probably. They better not. This should not even be up for discussion since Obamacare should have never been passed.
It is time for the earnest pro-American people to form our own death panels! We need to evaluate, decide, vote, and execute any deluded countrymen who are anti-America Marxists. We need to determine who should NOT be allowed to go on living because they are too much of a threat to the U.S. Constitution and too much of a drain on the people of the United States of America.
There are politicians, college professors, union bosses, and greedy businessmen who need to be scrutinized and evaluated by our death panels ASAP.
This is totally horrifying and, what’s more, something that could happen to my family. My younger brother has hydrocephalus and is high-functioning autistic. If his shunt ever failed and the doctor refused to replace it for a reason like this, I wouldn’t just yell at the guy; I’d beat the crap out of him.
Find a Catholic Hospital STAT. I hope they give a different “ethics” decision. I am appalled as a human and a cathlic that this hospital treated you and your family in this way. Its atrocious!
In the UK, where I lived for the past 3 years, (who have nationalized healthcare for those who live in a bubble) babies who were born with down syndrome were neglected in the hospitals by nurses in hopes that they would die so they would not be a drain to the government medical system. Parents are fighting over there to prevent that practice. They are also fighting over there for doctors to work to help premature babies live at comparable months to the US private medical system.
Government medical systems always cause problems. I had to wait 6 months for a scope to see, if something was wrong with me, then I had to wait another six months on the list to meet with my doctor to find out I needed to have surgery, and finally another six months on the list to have the surgery. There is no where to go for the government medical system (or NHS as they call it over there) for an appeal either. Everyone is assigned neighborhood doctors like we used to have neighborhood schools in the US. You only have one option in the UK. It is important to fight government medical care because funding is limited so they have to screen whether you even get a medical doctor to look at you. Before my scope I had to show them three years of records and get verification from my US doctors before I got my first appointment otherwise the process would have taken much longer. Lastly, the thing that NHS countries do not tell you is their government health system is for the poor and elderly (like our medicare/medicaid system) everyone else that is working is on private health care like in the US. I did not realize until 1.5 years into the process, otherwise, I would have taken the company health insurance, but I thought, heck, why pay the extra money I am paying for NHS with my 50% income tax rate. To spend extra money would be crazy.
The way to fix problems with the insurance companies in the US is not to buy into government healthcare, but to open up competition among the states, make it mandatory for emergency patients to have US ID (we have a real problem with illegals getting free healthcare by going to the emergency room for all their problems–this causes health insurance rates to skyrocket causing our current health insurance inflation problem, but no one wants to discuss that issue), make it mandatory for all person to carry US ID at all times, and make it illegal for insurance companies to refuse treatment of diseases that the person had no means of preventing. It is important to remember that there are certain rights people have in the US (life, liberty, and the pursuit of happiness), but healthcare is not one of them. We must have a strong charity healthcare system in place to take care the rest of the people. Remember that charity healthcare is where hospitals began, so don’t snub your noses at it. We must donate to these organizations to support there work with the poor, but a basic fact is we can never afford healthcare for all people there are too many diseases. Government is not the people to trust with healthcare because corruption breeds in government agencies that is why we have the right to bear arms. Our founders knew there would come a time we, the people, would have to over throw the corruption and begin again. Charities are the only way to get everyone the care they need.
This article is very sad. Doctors take an oath not to do harm, but I guess that went out the window with Roe v. Wade. It has been a down hill slide from that point on. No one respects life except there own in this generation. It is no wonder these parents are having difficulty.
I am sorry for you and your family and the pain you are going through. I am sorry your daughter is not getting the medical care she needs. More people need to know what has happened to you, your daughter and your family because this is only the begining of ObamaScare and I can guarantee you it will only get worse if we don’t put a stop to it. Praying for a miracle for Amelia and for America.
I had to go back up to the top and make sure of what I thought I read. This is in Philedelphia, Pennsylvania USA? Un-Freaking-Believeable! Sadly, this is only the beginning, if we don’t make absolutely sure that we KILL this stupid obamacare nightmare before it can fully take hold! I am so sorry to hear of your struggle. Have faith and be strong. There is a God who hears and answers our prayers.
I don’t know what resources you have, but I would recommend contacting Children’s Medical Center in Dallas, Texas.
This is a very sad, sad story. They denied there would be death panels, more lies about the healthcare mess. Hope its repealed.
From one mother to another: I hope you rip their throats out. This is a disgusting act of shitty medical care.
But of course the government had plenty of money to keep an illegal alien in the hospital for nearly a year, and to build a 5 million dollar turtle tunnel with TARP funds. Our government is crawling with evil people who waste money that could be better spent on the Amelia’s out there.
Not cool at all!!! This is a child. What kind of example does this leave for the up and comming kids of the world to see. Picking and choosing life is a choice of the ol powerfull doctors and goverment. I hope people learn from this that life is special and can not be taken for granit.I hope you can get through to someone to save her life. You have my families blessing…
While this is disturbing it is one of the choices that will be made if a person is not wealthy. Insurance and government benefits only go so far. obamacare will only make things worse. Evolution works without empathy. Sorry!
I’m so sorry to hear this. I wish I could do more than just pray for you, but I promise to at least do that.
Stay strong and keep fighting. Never give up.
Amelia is adorable. I know she brings great joy to you and your family. I pray the Supreme Court will find the healthcare law unconstitutional due to the “mandate” and with that the entire law will fall. The democrats passed the law WITHOUT a SEVERANCE CLAUSE, which means, if any part is unconstitutional the entire law is unconstitutional. No one part can be broken out of it. If any of the justices try to do that they should be impeached. Also the states have the right to NULLIFY Obamacare as it is in the purview of the states to do so. If I were you I would do what you can to take Amelia to India to have this done. I’m not sure, but I believe they would perform the surgery. With prayers and God Bless you and Amelia.
In Nov. of 2011 I was in the hospital and on life support for respitory failure (something that happens because of the severity of my asthma). This time things were really different. The doctor was from Hong Kong and I found out once I got home that he had only been in the US since Aug of 11 as well. According to my mother who has been with me through 3 of these RF situations in the past said that this time they did not have me fully sedated they actually had me just hooked up to profol (spelled wrong). and they kept testing to see if I was actually totally asleep (while I was vented and on the machine it was not a total done deal UNTIL I vomitted in the tube then they completely sedated me)..Anyhow, the doctor always did what the doctor who was doing the “big brother via the camera” told him to do. You read right!! There was a camara system in place and the doctor at an off site location made the decisons for my care…They got mad when my mother called my PCP and requested that he come up and help with my care. THEY REFUSED to even deal with my PCP DESPITE his having the right to do so (he had admitting status at this hospital). It was freaky once I woke up to have this camera watching my every move… SO people we really need to get prepared and have faith in God for the mircaelous to happen but we need to be prepared for this stuff to happen no matter we go to the hosptial at. I wonder how many people really will bother going to med school once they learn that the man behind the camera is the guy in charge. Welcome to the end of the USA. MAy God have mercy on our country. As for the writer of the article I feel for you and will be praying that your daughter will prove medical science wrong!!!
Let me start by saying I am 100% in favour of Amelia receiving whatever medical care is in her best interest and if, all factors considered, that includes a kidney transplant then that is what she should get. Those who have read my other posts on this site will know I am a supporter with a vested interest in the greater WHS ‘community’.
Assuming Chrissy’s recollection of the conversation at CHOP is accurate (and I have no reason to believe otherwise), then there is no doubt that both the doctor’s and social worker’s conduct, on a professional/patient relationship basis at the very least, needs to be called into question and the hospital held to some level of account.
What bothers me with this debate though is the emotive language used by a large number of commenters who take umbrage with the doctor ‘playing God’. If one’s faith dictates that there is an omnipotent being who reserves a sacred right to cast the sole vote over who lives or dies then surely, to extend that rationale, any intervention by a doctor would constitute the same, if not more of a transgression than doing nothing. To continue the same reasoning further; the underlying danger is that, at its most extreme, this ideology ultimately leads to the Christian Science viewpoint whereby faith in God and the power of prayer is seen as a valid replacement for the role of modern medicine. I am not for a minute saying that the ‘doing nothing’ option is defensible, nor am I suggesting that anyone who offers up a prayer for Amelia is shunning all common sense, but merely opening up the discussion by questioning the logic of some of the previous comments.
Please understand that I have absolutely nothing against the holding of personal spiritual beliefs; on the contrary, in fact. However, doctors are men and women of science, and decisions in hospitals are – or at least should be – made impartially on a case-by-case basis, using the sound practices of evidence-based medicine. There is, as far as I can see, no benefit to be gained through individuals muddying the waters with their respective religious perspectives. This is also my main sticking point with faith-based health provision, although that’s another post for another time.
At any rate, contrary to popular misconception, these high level decisions and guidelines are made and set by hospital management, not by individual doctors with a so-called god complex. While some modern interpretations of the Hippocratic Oath do talk about not ‘playing God’ – a more relevant passage for the doctor in question to concentrate on in this specific case may be:
‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.’
Why doesn’t the President, Congress, etc., redirect wasted tax dollars for ex: the $770,000,000.00 that Secretary of State, Hillary Clinton, handed over to 27 countries to built Islam Mousks for “good will” and put this money towards oh, lets, say better use for American citizens like….HELPING TO SAVE THEIR LIVES WITH NECESSARY HEALTH CARE WHICH WOULD INCLUDE SURGERY?
I pray you’ll find the right hospital and surgeon for your daughter right away, who will approve her surgery to save her life. Jesus loves the little children and I pitty the fool who goes against them!
I am so sorry to hear this. It’s heartbraking. I will pray for Amelia everyday. As a mother of two little boys and the sister of a young woman who also has an Intellectual Disability, I can not imagine what you and your family are going through right now. I really hope from the bottom of my heart that Amelia gets the care and surgery she needs to have a bright future. Just don’t stop fighting. God Bless you guys.
To the Rivera Family;
i don’t know if an adult kidney can be used for a transplant for a child, but if so, then, your daughter can have one of mine, my blood type is O+, you can email me at kelleychristina@love.com
And this is what is wrong with our medical system! Insurance companies and doctors playing God and deciding who shall live or die. I am outraged with this. Who is to say what great things your daughter could do in her lifetime? She probably loves unconditionally and brings smiles to many peoples faces. I really hope that she gets the transplant that she will need and I would really like to talk to the doctor about the Hypocratic oath that he took. His opinion has no bearing on this, he has taken an oath to help your daughter!
I will pray also for Amelia- My heart breaks for you. I cannot even imagine the pain you are.
If there is any way to seek help in another country, I hear Thailand had good medical care.
Start a fund at a bank and advertise for donations, to help with the expenses.
The devil’s minion J. Mengele was also a ‘doctor.’ May he rot in hell.
This ‘doctor’ has violated his code of ethics and therefore should have his medical license revoked.
I was appalled to read about your story. I can believe a dr could treat people that way! What happened to human rights and the right to live!! Come to Canada – your surgery would happen here for sure! No one can discriminate against mental abilities! Go north!
You do know other people are denied transplants for other medical reasons too. I guess i can see how its hard to take the news but i am able to see the Doctors side for their reasoning. So the parents pass away, and its left to the tax payers to cover her medical bills through medicare. I really hope she isnt already being covered by any type of state aid coverage.
EVERY child has the right to live. I am so sorry to hear of your situation. Don’t give up, have faith and God Bless Amelia and your family.
Every person is beautiful in the eyes of God and has a right to the life they’ve been given by God. Fight for your daughter.
I don’t really have an opinion either way. I see both sides of the coin. But what I find amusing in a lot of these comments is the accusation of the doctors “playing god”. Are they not playing god if they agree to the surgery? If we are to leave it up to god, then prayers should suffice, not medical care.
GOD gave the doctors the intelligence and ability to heal and prolong life as long as possible. It is the doctors’ DUTY and RESPONSIBILITY to fulfill GOD’S will to prolong and improve this little girl’s (and all other patients, for that matter) quality of life as long as possible until GOD decides when it ends.
This is outrageous! If this is not cleared up very quickly, I strongly encourage you to take Amelia to a different hospital. Make CHOP shape up later. Trust Amelia’s transplant to a team who will treat her right without having to be pressured into it. God bless all of you! Praying for Amelia every day.
Nina, a person who decides it’s time to throw away God’s gift of life to someone, instead of using the tools He has made available to us to preserve it (medical care,) is, in fact, playing God. You said that “prayers should suffice, not medical care.” What has given you the impression that God and medical care cannot have anything to do with each other?
CHOP no longer DESERVES to do Amelia’s transplant which would be an honor for another hospital to do not based on the fact that she has a disability but that you chose them for your daughter. There are so many other good hospitals with ethical doctors that you can take Amelia to. Find doctors and a hospital with morals and your family will be happier and much better off! Perhaps try Buffalo or Rochester in New York instead; both have excellent transplant centers.
I am so sorry for what has happened to you and your daughter. I’ll pray for Amelia that she gets what she needs.
AND- Chris is an ass. Pay no attention to such fools. If we’re all fortunate, Chris will be denied medical coverage because he’s an idiot without purpose.
Chris says:
January 27, 2012 at 12:32 am
You do know other people are denied transplants for other medical reasons too. I guess i can see how its hard to take the news but i am able to see the Doctors side for their reasoning. So the parents pass away, and its left to the tax payers to cover her medical bills through medicare. I really hope she isnt already being covered by any type of state aid coverage
You should try a Catholic hospital while they are still allowed to make decisions on life.
Nina, how you can find any of this “amusing” is beyond my ability to understand. I wonder how amusing you would find it if you were in standing in this woman’s shoes. If and/or when this type of situation should occur in your life or to someone you care about I’m thinking it would no longer be “amusing” in whole or in part.
I just HAD to come reply to Chris – you are a disgrace! How dare you weigh “tax payer money” against a childs life – what is WRONG with you? Let me educate you – if Amelia doesn’t have a transplant, she will be put on dialysis and guess who pays for dialysis? Medicare. Guess which treatment is more expensive – transplant or dialysis? Dialysis. You are an idiot and I am appalled to even read that you would say such harsh things about a young girls life. None of us know what will happen in 12-20 years and none of us know how long a transplant will last, these are all hypothetical scenerios.
I wish Amelia luck and prayers – there’s a transplant team out there, somewhere who will help her.
It is written in our Constitution that we have the INALIENABLE rights of LIFE liberty and the pursuit of happiness.Their action is unconstitutional, and therefor illegal in this country. Sue them. And if that beautiful child dies as a result of the action they refuse to take, sue them until you own the hospital, and then change the rules. Meanwhile, there are other hospitals. Children’s in Pittsburgh PA, Another in Ohio, and St Jude’s in Louisiana. May God watch over you all.
As a nurse this turns my stomach. It is against everything that we stand for in this country. Who can weigh the value of a life? As a parent our love for our children is the same no matter what their abilities. God made her this way, does that make her any less of a person? What will it be next? Is there an IQ limit for transplants? This is crazy. If they are weighing the stress that it will put on her then what about the stress of a lifetime on dialysis? Or is that next to be denied?
oh for goodness sake she has the right to life
What if I specifically give her one of my kidneys? How do I find out if I’m a match?
I am so sorry for what has happened with your daughter. May this story empower everyone who commented on the list to sign up for organ donation.
This is so grossly wrong, wrong, wrong! I have a 23 yr old Mentally retarded Daughter who also has Tuberous Sclerosis, Epilepsy and multiple other disabilities. She is a total joy to all who met her. NEVER give up fighting for your baby! EVER! God gave us these children for a reason, and GOD makes no mistakes! Is there a ARC in you area (Association for Retarded Citizens), perhaps they can help. I would check with numerous Neurologist also. It is a very hard road to go down, but you will make it with God’s help. Your family is in my prayers!
This same hospital sends teams of doctors to 3rd world countries to perform life-saving medical treatments with no regard to the quality of life the patient will have. Here we have a beautiful child with family support who should be entitled to the best health care because we live in the U.S., and CHOP wants to play God by judging her quality of life. This is so wrong!
I work with kids like Amelia and face this kind of discrimination even when it comes to getting my little students glasses “you know they’ll never read”!! I have spent my career addressing the issue that doctors are not gods, but humans. They have no business making decisions about who deserves to see or not, to hear or not or to live or not!!! Don’t give up on your children!! They are ALL beautiful, ALL worth as wonderful a life as their caregivers can give! Don’t let some doctor in a high tower make you feel bad about making him look like the idiot he is while you find an ETHICAL physician who is there to do what he swore when he became a doctor; “First, DO NO HARM” Someone should quote to your peruvian executioner!
There is no way I will let this happen in our America. I have a daughter with special needs and this will only be the beginning if we don’t fight.
While I haven’t read all the comments here, I’ve read quite a few. The whole scenario is ludacris. But what really, really, REALLY galled me was the doctor’s comment: “I have been warned about you. About how involved you and your famliy are with Amelia.” Please correct me if I’m wrong about this…I thought that’s what being a family is about; getting involved.
Does this doctor NOT have any children? If he does, I bet he never got to know them in any capacity. His wife probably raised them herself, while he just saw them a few hours every weekend while he wasn’t working. And those few hours consisted on eating dinner, perhaps making them do household chores, but no real personal interaction. What a cold, distant, inhumane individual that man is!
So sorry, what a terrible situation! There are much better hospitals out there – screw CHOP and go somewhere else.
As for the transplant surgeon and the social worker, there MUST be repercussions for them – please post their full names. They should be fired or reprimanded or shamed publicly in some way. I’m sure this wasn’t the first time they’ve done something like this and probably won’t be the last with no action.
My best frien has a son that will turn 19 in June ~ He is a downs child WE LOVE HIM SO MUCH OUR LIVES WOULD NOT BE THE SAMAE WITHOUT HIM we lost his mother 2 years ago at the age of 43 to cancer and she pushed his to the max He can make his bed fold his clothes shower shave and a few other things SHE NEVER GAVE UP ON HER CHILD EVEN ON HER DEATH BED SO YOU FIGHT LIKE HELL FOR THE RIGHTS OF YOU BABY GIRL GOD be with you and your husband and HE really needs to be with those idiots you are dealing with and I must say you handled them much better and I would have
As a physician who has practiced many years both in the US and
in underdeveloped countries, I appreciate your story and the comments that followed. I donated one of my kidneys to my stepson
only to have him lose it. However, I also understand the position
of the staff at CHOP and agree with their position.
23 years ago my son had a liver transplant at the University Hospital in Madison WI. The transplant team there was awesome. I don’t know if they share that horrid idea. I pray they don’t. Dr Kalayaleu was the surgeon who was Primary. He told me the first time I saw him before Justin had even been evaluated that he promised me he wouldn’t let my son die because of money. He was true to his word. May God grant you the strength & courage to keep up the fight for your little angel.
I’ve read through many of the comments and I have to say that frankly, I am shocked by some of them. People who claim to be good Christians shouting and condemning the doctor, accusing him of such things as being a racist and “playing god” by refusing to step in a save a life that only god can take. Such amazing hypocrisy considering that God is also the only one who can give life, and is the one who made this child the way she is. Considering the fact that the mother specifically refers to the man with such statements as “I point in his little, brown pudgy face” and pointing out his “Peruvian accent” (which makes me curious. What exactly dose a Peruvian accent sound like? Is it different from a Chilean? Or Colombian? I’ve never heard any of those myself so I wouldn’t be able to recognize such a thing) to make sure that you understand he is a foreigner, as if this makes him less qualified to be making this decision about her child.
I honestly can’t help but wonder if perhaps there is a huge misunderstanding in this. A ‘loss in translation” so to speak.
If English is not his first language it’s possible that he didn’t have the correct words to try and explain this in a way that didn’t sound so cruel and heartless. What if he didn’t realize how offensive the words “mentally retarded” were, and simply thought it was another way to explain the brain damage he kept referring to? What if he spoke slowly not to be condescending to her, but because he was simply trying to be clear and attempt to overcome his own communication issues? I think if anything the social worker is the one who failed both of them in this exchange. It should have been her job to make sure that the doctors concerns were properly voiced and understood. Instead she just played with her phone and took notes and watched as he latched onto the only word that seemed to get a response from the mother, not realizing that it wasn’t because she understood that word, but because it hurt her so.
She admits he voiced concerns about medication. SERIOUS concerns. You can not stop taking anti rejection drugs. Depending on what other medications she may be on for whatever other conditions she has there could be grave interaction concerns. And you can’t just give them too her now to see whether or not she’ll react to them.
If the medications give her seizures it can cause more severe damage to her already damaged brain, even cause death. I have a friend who has seizures so badly that they actually installed a pace maker in her brain to try and control them. It doesn’t always work, and when she does have them they are frightening to witness.
Say the child gets the transplant but the medications do give her seizures. Say the seizures reach a point where they get worse everyday and the mother has to sit by helplessly as she watches the violent convulsions wrack that small body, praying for them to stop and hoping that when they do she will still be breathing, all while knowing that the drugs she gives that child every day are the cause. If the mothers willpower breaks under her childs suffering and she stops giving those drugs the child will reject the kidney, need more surgery and probably end up dying while they try to come up with an alternative. But if she keeps giving the drugs she will have to live with knowing that in a way she is directly contributing to the childs suffering,
All you people acting as if this transplant will be some magic cure all need to stop being so self righteous and think that maybe, just maybe, there is a very good reason that he doesn’t want to do this, that perhaps it will only contribute to more suffering for this child. The parents have every right to be upset and heart broken, I expect nothing else from a loving mother. There is a time for rage and anger and tears, and then there is a time that needs to be put away and a clear mind put before the heavy heart to try and make the best decisions. When rejected her heart heard what she wanted, that it was based on discrimination that she faces so much of in the world, instead of letting her brain process that perhaps there might be something more.
I wish the best for this family. That whether they get the transplant or not that they are able to enjoy every precious moment they have left with their daughter. And that they can find the peace to make the hard decisions if that is what it comes down to.
saddened by all put my feelings into words.
Upon first reading the blog entry, I was both shocked and had a nagging feeling the doctor left out a lot of pertinent information. I agree, the social worker should have made a better attempt to humanely explain the doctor’s opinion.
I think you would be hard-pressed to find a doctor that would actually go through with the entire process – performing the transplant, giving the child anti-rejection drugs, and all the while knowing it is only a temporary solution – knowing the child has a great chance of not making it through the first round.
My heart goes out to Amelia’s family. I’m pregnant with my first child who so far seems to be healthy as a horse but I’m always wracked with “what-if”. I’m on a few medications that can cause problems in newborns, and because I’m carrying a baby, doctors lowered my dose considerably even though the meds don’t work as well for me. They have also denied me care and medications because of the fact that I’m pregnant – because the child is more important right now, and they don’t like to take chances. It seems a lot of physicians out there are concerned about lawsuits, which may also be something for this blogger to think about.
God Bless.
I will donate my kidney. I have been tested already and my results are in San Antonio TX. Please let me know and i will contact my hospital to check for a match
To all those claiming they will donate a kidney to Mia….Are you willing to do the same for anyone or just for her because this is a sympathetic story? Every single day there are mothers, fathers, sisters, brothers, daughters and sons who are denied an organ transplant for various reasons. These are people who are loving, kind, funny, giving, gentle, intelligent, and many are/were the main caretakers of their families but because of the guidelines set aside for organ recipients and the extraordinary costs associated with the process, they are denied. Where is the uproar for these people?! Where is the outrage at the doctors who deny fully functioning patients?
I doubt this will make it past the moderators because nobody likes to hear the truth but everyone needs to stop, step back, and look at all the facts of this case. It is so easy to jump on the sympathy train because everyone loves a juicy story with a cause but to attempt to bully CHOP into giving this child a transplant simply because her mommy and daddy think she should get one is horrible. If Mia does not meet the criteria, then she should not receive a transplant. Period. The guidelines are there for a reason and obviously this family/Mia does not qualify for more than one reason and not just because of her mental incapacities.
And before anyone states otherwise, I am a mother of a child with both mental and physical disabilities. I also have 2 cousins and a nephew with mental disabilities so YES…I DO know what this family is facing. I have also worked in the medical field for over 20 years so I have seen the other side of this situation where the family unit breaks down, the other siblings are ignored and end up with serious issues later in life, and in the end the transplant recipient ends up dying soon after, leaving the family with extreme debt and guilt. There is so, so much more to this story than just a “mother championing for her poor disabled child”.
A good storyline tugs at your heartstrings and garners sympathy but that does not mean it is 100% truth. There is ALWAYS another side to the story and it would be interesting to hear from the doctors and social workers what the other side is.
Is there any update on Amelia’s story, is there a hospital and Dr that has come through for this little girl and her family?
Contact the Disability Rights Network of PA 1-800-692-7443 extension 400
I agree with the CHOP physicians. Organ transplants are so precious, they should go to those most likely to benefit from them.
Where can Ifind out more about your story?
I am disgusted! Especially with some of these comments! I was brought up that if you can’t say something nice don’t say anything at all! How can anyone deny a child a better life! Our kids r so amazing we would do anything for them! Stay strong!
@bhigh: That could maybe maybe possibly be excusable, but according to the story even if the parents donated themselves (aka, nobody else waiting for an organ would “lose it”) the transplant would not be done, and that is completely and unquestionably unacceptable.
I am saddened by your story. Nothing makes me madder than health care professionals that aren’t concerned with health. As the mother of a disabled child (my son was born with spina bifida) I know how important it is.
I’m fortunate to live in area with a fantastic children’s hospital though. I know you live in Philadelphia but if you have the finances I recommend St. Louis Children’s Hospital. They have cared for my child for almost 15 years.
I will keep Amelia in my prayers. She deserves the best care she can get and I hope and pray that she will get it. I admire you for the stand you have taken for your daughter.
I’ve been following this story since I read the articles on HuffPost several weeks ago. The latest that I’ve read is that the parents met with the transplant team two fridays ago. They were told that they still have to determine if Amelia is medically eligible. If they deny her again even with a willing living donor. What are the parents going to do. Are they going to go back to the media in hopes that the public outcry will get the Dr’s change their minds. It’s sounds to me like they want this transplant to happen at any cost. If that’s the case give them what they want. But first make certain that they are aware of the risks involved and that they accept those risks. Then make them sign a waiver that prevents them from suing the Dr’s and the hospital in case something goes wrong.
Since the parents have already addressed, and apparently eliminated, the “anti-rejection drug” requirement and boiled the rejection for a transplant down to Amelia’s lack of Intellectual perfection in the eyes of the Medical Professionals involved, it appears to me that this is little more than forced euthanasia. This is a natural outgrowth of eugenics as practiced in the U.S. and elsewhere. As we have seen in the justification of abortion on demand, if during a pregnancy the baby (the biologic term assigned for laboratory jargon is “Fetus”) is found to have a birth defect of any kind,(especially if the result of the birth defect will result in diminished intelluctual function), the very first course of action advised, is to abort the baby (Fetus) lest its birth prove too much of a burden on the parents, the medical professionals, and society as a whole. This has been developing over the last 150 years or so since the origin of the Progerssive movement in Prussia. Progressivism pervades every level of our society and is particularly prevalent in the medical profession not to mention many in politics.
To get back to the point of being rejected for a transplant; What the doctor basically communicated to the parents is; “You should have aborted the fetus because you knew is was malformed, therefore, we, the medical professionals, will right this wrong by preventing you from getting the requested transplant for your intellectually deficient child and allocate our time and energy elsewhere.” If the doctors’ rejection doesn’t, at least, piss you off, then you should take a moment and consider the following. At what point in time will I be considered as not deserving of medical attention because I am no longer identified as being productive or desireable to society? Will that consideration be based on my age? How about after an accident? Or maybe they’ll find a genetic marker in some future blood test that reveals I have a predisposition for cancer? Diabetes? Blindness? You name the difficiency. Know well that the Progressive Elitist won’t hesitate if it furthers their end. Personally, this elitist attitude scares the hell out of me.
This story is very disturbing Chrissy,really sad how a well known hospital’s transplant staff and ignorant physician can make such statements. The Flood Sisters support you and your daughter. You are doing such a wonderful job in fighting for her! Keep it up and change the lives of other children who are like Amelia! xo The Flood Sisters, http://www.floodsisters.org.
I would have been more moved if this article was written better ane with less bias. This isn’t the doctors fault. For all we know he may want to do the surgery, but administration won’t let him. Like it or not, the medical industry is a business, and they have to make decisions like one. Medical supplies, doctors, nurses, surgical tech assistants, and equipment aren’t cheap. Unfortunately situations like this arise.
This is a pro-life issue….everyone should be alarmed when the medical community is allowed to “chose” who to provide medical service to. Choice is the word used to describe a woman’s right to murder her unborn child. However once the medical community is no longer involved in that “choice” and the baby is born that same woman is liable for child abuse and murder charges should she attempt to or murder the same baby. Can people not see the hypocrisy in this! We should all be scared to death with what is possible thanks to Obama,s so called health “care” more like health “scare”. My prayers go out for this family and their precious daughter.
So you’re saying if a woman is raped, or if a pregnancy could cause her death and she has other children to take care of (or doesn’t), then she shouldn’t be allowed an abortion. This particular situation has nothing to do with Obama either; I’m pretty sure he didn’t inform this hospital not to perform lifesaving procedures on this child.
This is an awful situation and only goes to show that good conservatives hold true to the fact that they’re ‘pro life’ until the fetus becomes a newborn; then this new person is on their own, whether or not they’re a ‘burden to society’.
This little girl is beautiful! She has divinely made it this far, so never expect her awesome parents to give up. I will be praying and cheering for all three of you every step of the way.
I am so horrified after reading this article. The doctor and the social worker are supposed (in a civilized world) to be healthcare providers – dedicated to those who need their help. This is America….it’s supposed to be land of the free??? Free for what? Giant hospitals to deny patients care if it’s not cost effective?! Those two are horrible human beings – they are nothing but gatekeepers to health care for the chosen…protectors of the hospital’s – stockholders wallets. It’s truly disgusting.
I can begin to understand the doctor’s arguments if the parents were asking for a kidney. But they’re not. They’re providing the kidney and all they want is to have the transplant done. So now the doctor’s argument is, “I don’t want to POSSIBLY endanger the child’s life in the future, so I’ll just make sure she dies now.” If anything, doing this will make the parents/family MORE likely to donate in the future because they know what it’s like being on the other side. These doctors are now preventing even MORE people fro getting better.
Reading this made me sick to my stomach and I think both parents deserve even more credit for not simply assaulting the doctor. If every parent in the world were as good as these, I don’t think we would have as many problems as a species.
To the doctor(s), should they be reading this: What you’re doing goes beyond the simple line of ethical/not ethical. It is evil. Convincing yourself of anything less is rationalizing and if you find yourself feeling bad over, it’s because on some level, maybe you realize that it is. Imagine it was your own daughter. What would you do?
Yes they were warned about you, your one of those people
whose love for their children is so strong that you will not compromise you will not back down from that love to listen and obey their enlightened agenda to select the better race and eliminate the inferior people. It’s eugenic all over again. Eugenics – the bio-social movement which advocates the use of the proctices aimed at improving the genetic composition of a population. This concept was practiced in the early 20th century
and later by Nazi Germany. In this country it was
inspired by supporters of Charles Darwin and company who
having had science establish evolution thereafter tossed
belief and faith in God out the window. You have to forgive them they are Godless and know not what they do. They are lost souls seriously. They see their job is to use the existing treatment resources for the best possible good. Unfortunately they get to decide what that good is not God. They lost the idea that we are ALL created in the image and likeness of God and we are all equal in that respect. To them your baby isn’t equal. Fortunately there are many good people in this world and in this great country many who will stand up to the forces of darkness and evil and will fight.
I came across your page when I read about your family in the news. I don’t know how you or your husband restrained yourselves and didn’t punch that doctor right in his face. My daughter is 6, is ASD, and also “globally delayed”. It is not nearly the same as what your daughter is going through, I know, and I can’t even begin to compare the two. But as the mother of a developmentally delayed child, I am sick about this. People just don’t understand and are so cruel. Our children are HUMAN BEINGS damn it! They deserve the same (if not more) level of respect and compassion as anyone else’s child. Perfect brain or not. Human lives are lived minute by minute, day by day. Every single minute matters. So what if the transplant has to be done in 12 more years? How is that a reason NOT to do it??? To me, that is reason TO do it! 12 more years! Nobody knows how long we have left on this earth. We could all die tomorrow. Or next year. But, until then, we all deserve to LIVE. Especially our sweet innocent babies.
These types of considerations are made all the time prior to a transplant. The complications of surgery and post surgery dictate a calculated risk too high for this team to take on. It’s not BECAUSE of mental retardation, it’s because of WHAT mental retardation complicates. People get denied all the time because organs are limited and they don’t just hand them out first come/first serve. Even if the family wanted to look within its own unit for an organ there is no guarantee there will e a match. Genetics doesn’t work like that You are less likely to find a suitable genetic match in extended family than you are to find a non-related donor. All I’ve seen here is expression of ignorance about this field of medicine and the unrealistic expectation that ANYONE can have MAJOR LIFE ALTERING surgery without complications. This isn’t star trek people there are huge risks involved. Too huge for this young child to handle as upsetting at that is. We still do not live in a time when we can simply save everyone from whatever they suffer. What should happen if there’s a complication on the table? Should this doctor then be sued for performing a risky procedure knowingly? If people weren’t so litigious, maybe doctors wouldn’t have to fear law suits and would be more willing to take risks.
There’s also a team of people that make these decisions not one doctor. Any people have to weigh the risks and of course the desire is to save everyone but it can be done. It is not for us to get upset when every child cannot be saved. If it were my child sure I’d fight like hell too but with the heavy realization that it may do no good. We don’t live in a time when everything can be fixed and considerations must still be made about what can happen after…
Dr. Michael Conllin, Nephrology, Doenrbecher Children’s Hospital, Oregon Health and Science University.
Our daughter is mentally delayed. We had talked about her needing a transplant. He explained that she would not be eligible for the list, but if we had a kidney to give her, he would do the surgery.
I’m so sorry. I know exactly how hard this is. I am in the trenches with you every day, and my daughters doctors don’t warn others about me. If they did, they wouldn’t be her doctors for long. I find ones that hug me and tell me I’m the best mom. I will never give up on what I think is best for my daughter, even if that means gathering her up in the middle of her urology appointment and walking out, because this urologist just said “kids like her” What does that mean exactly? She has a disorder that less than 30 children in the U.S. have, so I doubt he’s seen another 5p patient. He meant “mentally retarded kids” and that is NOT her diagnosis. It is part of it, but I don’t think that affects her kidneys. And I will not allow her to be put at a different level of care because HE has issues.
WAIT- your daughter isn’t eligible, but a murderer in prison is? Who can I call, write, etc?
First off, I don’t know where that ignorant “doctor” comes off making judgements about the value of your child’s life. I hate to go all “Godwin” on you but I bet if he had been a German doctor during WWII, he would’ve found a nice, cozy position on the T4 program committee.
Oh, and my aunt happens to be on a kidney transplant list…and she has schizophrenia. And I doubt there’s much that wrecks quality of life like severe mental illness.
Coming from a parent who has had to endure the unexpected loss of our two year old son and subsequently donated his organs I am very saddened by this story. This child did not choose to be born like this and you, her parents have had the challenges of raising a child with special needs already. You know what it’s like to provide daily medical care to your child. Regardless of Amelia’s mental capacity or her potential to give back to society she is someones child and she matters to those that love her. Letting her die by denying her a transplant just doesn’t seem right to me. For us it did not matter who our son’s organs went to we just knew that other families were not going through that heartbreak that we were at that time. I hope they give this little girl a chance at a healthier life.
I work with people who have mental health issues.They are human just like us so called normal folks.With the proper health care they can live long and fulfilling lives.If the family is not asking to be put on the waiting list why not do the transplant?
To Hattie (and others who say doctors make these choices often): Yes, valid point – people are denied transplants for health, age, etc. But according to this story, this doctor said the denial was for “mental retardation” which leads to a poor “quality of life”, plus something about the child not being able to take medicine by herself. IF the reason is prior health conditions, poor reactions to surgery, poor prognosis after surgery, fine. BUT STICK TO THAT. If this were another child of the same age with all the same health problems and history but no mental disability, would the answer be the same? If so, say so, and don’t highlight “irrelevant” information in pink highlighter. I know several people with Down syndrome who have a “quality of life” (happiness, accomplishment, positive effect on others) MUCH higher than 90% of the people I know with “typical intelligence”.
To someone who suggests libel or slander — Look that up, please. Simply repeating an occurrence that damages a reputation is not libel or slander. TRUTH is the ultimate and definitive defense to either of those accusations.
I absolutely love the line: “I have been warned about you.”
Parents everywhere salute you. God Bless.
This article is absolutely appalling. Just because she has delays does NOT give anyone the right to use the “r-word.” It’s disturbing to think that there are idiot doctors out there who won’t treat a patient because she is different. They would rather let her die than give her the necessary treatment that she needs. How pathetic.
This breaks my heart- I have a friend that passed away several years ago- she had autism,epilepsy and she was intellectually disabled. Her mom approved this young lady to be an organ donor- and by doing this she saved the lives of 3 different people. How is it that her organs are good enough for ‘neurotypical’ people but this little girl isn’t good enough for donation? Go to a different hospital or even a different state if you have too!!! Keep fighting for your daughter!!! She is beautiful and deserves a chance at life- and more importantly- she is a human being, regardless of her diagnosis!!
I still cannot believe what I just read. I cannot believe that you say in a conference room with a physician and a social worker…the physician having taken his hippocratic or physician oath….could actually tell you that your child should not have the medical care she needs due to another medical condition she has. It is unethical. If both he and the social worker feel that way then they need to quite practicing at the children’s hospital and work in private practice…ofcourse clearly advertising that they practice under bias…they are unethical in their choices…that maybe only people of certain color or economic conditions could step through their doors…maybe only people who are a certain race…etc…. I am still sickened by the fact that you had to hear that….it is a prejudice. I have a daughter who is mildly mentally retarded. I am faced with “brick walls” also on occasion but not like that. I hurts..as a parent to know your child cannot participate or is excluded but this kind of exclusion is inxcusable and it shameful to the medical profession. My heart goes out to your family. I wish you and your little one Mia the best the world has to offer….no one really knows…not even the physicians…social workers etc….know what OUR children are really capable of doing..becoming…conquering until they are given the opportunity..the chance….it is purely a sin that the neurologist is playing “God” and taking those opportunities away. By the way I am a Registered Nurse and if I sat and listened to a physician speak to parents that way I would certainly resign from practicing with him.
I understand not giving an alcoholic a new liver, but this is just WOW! I can’t imagine having to have someone say this to my face. My prayers are with you as you continue to fight for your beautiful daughter!!!
As a mother, you are my hero. It is absurd that you should have to fight for common decency, but you are doing it with grace and righteous anger. You are asking for them to do their job– to fix a medical issue. What happened to do no harm? Be strong, and continue fighting the good fight. Your mother’s love will overcome their bureaucratic ignorance.
What horrible and disgusting people the doctor and social worker are, they should be ashamed of themselves fired from their jobs, stripped of any licenses they have to practice medicine and social work and never be given another job in those fields again.
I commend you for standing up for Amelia, you are a great mother and it’s people like you who help people like Amelia gain their voice and stand up for their own rights so good on you both!!
I just wanted to say she is a beautiful that little girl and I prey someone has a heart and gives her the transplant so she can have every
possible opportunity in life as any other child would she will be in my prayers now and always
From what I know they will and have given organs to HIV patients and give one to a mentally challenged person. My son has autism, I would be so pissed.
OMG! i am sitting with my mouth still open! this is disgusting! I have a child with severe disabilities and i can only imagine what you are going through. I too have found that the medical profession seem to give up on our beautiful children with brain problems. I would like to see them in the same situation. they too would fight as you are. Please keep this fight going for your precious child. Come to Australia- id donate to her if i could!
All the best to and your family.
xx
I just read this and I am in tears. I am so mad and upset by this story and what you are dealing with. How could any doctor sleep at night saying the things he said to you. This is outrageous. I so hope your petition helps this cause and your little beautiful Amelia gets her transplant that she totally deserves. Keep up the good fight and teach these nonhuman doctors what its like to have feelings. My thoughts and prayers are with all of you. I wish you the very best in this fight.
As a teacher of children with severe disabilities I was touched by your story. Keep fighting and don’t give up hope. There are doctors and hospitals out there who will give transplants to children with mental retardation. I know two children with intellectual disabilities who received transplants (liver and bone marrow) at Children’s Hospital in Washington D.C.
What is the name of the doctor?
This has got to change. I have friends who are going though the same thing with their son. He is autistic and needs a heart and kidney transplant.
I have a eighteen year old niece that has mental disabilities but she she the sweetest person I know. Two years ago my sister’s cat died after being hit by a car and as we stood in the living room watching Leia cradle her lifeless cat Kate asked ‘cat dead?’ When none of us answered she repeated her question. The second time my mother answered and said ‘yes, cat is dead.’ Kate went over and hugged Leia the best she could to show that she was sorry that her Auntie Leia had lost her pet. This was something that we had collectively decided not to do but someone that isn’t “normal” if you will comforted Leia when all the rest of us just stood and watched.
Quality of life is a silly term seeing that there are supposedly normal people that are a waste on air so to speak and their are those that will never lead normal lives that are better people than those that are “normal” but some people would like to pretend don’t exist.
I have a little sister with a severe seizure disorder that has also left her mentally disabled. Her illness is part of the reason I have decided to pursue a nursing career and work in neurology/psychology. To say that because a child does not think exactly like we do means she has a lower quality of life is false. My sister and you daughter may not be able to understand everything that we can, but they still love, hug, laugh, and enjoy life just as much as we do. That means they have a right to health care.
To say that children with mental disabilities have no right to be saved is evil. I will pray for you family and spread the word. I wish I had heard about this earlier. Take care.
I thought in the oath that the doctocr’s take it said to first do no harm. What in the world is this doctor and social worker thinking. I am outraged and angry by this article. I am sorry that you have to go through this for your daughter. I pray that you keep striving to get everything that your daughter needs for.
Wow there are no words for how disgusted I am by these doctors. Who are they to decide if her life is worth living? From the pictures posted she seems like a very happy little girl. Just because they don’t think her quality of life is good based on science doesn’t mean that her parents aren’t doing everything they can to make sure she has a good life.
This is outrageous. Disgusting. Abominable. Honestly, I am disgusted by the fact that the doctor and the social worker are allowed to continue working. I have family members and friends with mental disabilities, and I have never met, in my entire life,other people more kind and caring and loving than them. To say that a child has a lower quality of life because of something she did not ask for, nor something she can control is repulsive and just plain sad. Never stop fighting for her rights. Praying for you.
I have an autistic daughter ant I cannot imagine the pain you must be going through. We were lucky never to have physical problems with our daughter, so I have no experience but surely it is illegal to discriminate in this way. Prayers for you and your beautiful Amelia.
This story is appalling, but unfortunately, even with current medical knowledge, is not uncommon. I would have thought the US was ahead of Australia in this area, but this story probably puts us on a par in some ways. I had two boys with severe neuromuscular disorders, degenerative in nature. Their physical disabilities meant they couldn’t speak, but they could communicate well in other ways, and understood everything that was happening around them. We were first given a prognosis of 6 years for my oldest son but he lived until almost 14 years. We were told when my second son was 3, and had pneumonia, that he wouldn’t survive, even though the treatment for the pneumonia was helping. Fortunately we found a doctor who would listen and support us, who allowed BiPAP respiratory support and resuscitation methods. He was still given 6 months to live, and exceeded 6 more years. We were very fortunate to have some very good, younger doctors, who actually listen to parents and have learnt a lot more about disabilities and quality of life. However there are still many older doctors, whom we have had to deal with, who have exactly the same sort of attitudes to the Peruvian doctor here – respiratory, neurology and orthopaedic consultants with many years’ experience, including one with personal experience of having a child with a disability, but still the same attitudes. Fortunately in some situations we were able to find ones that would listen. I do often wonder, if they had allowed James and Scott to have a trache and ventilator, as many kids do now, how much longer we would have been able to share in their lives. It was our equivalent of the “Peruvian” doctor that said no to both. Given this story was from January 2012, I’d be interested to hear how Amelia got on. Did you find a doctor that would listen and agree to the transplant? Keeping you in my thoughts and prayers.
I literally feel my heart breaking after reading this story. I have already started sharing it in my fb community.
Thanks, Jefferey Gatehouse for wolfhirschhorn.org