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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887 Responses to Brick Walls

  1. Jeff Stein says:

    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?

  2. Mark Grinstead says:

    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.

  3. sara says:

    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.

  4. Hattie Jameson says:

    @phil: Your comments about the progressive movement and then claiming this doctor wanted this child to die because she’s mentally retarded are downright ignorant. As for “…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…” Every day there are people who are not given transplants because of factors like AIDS, HIV, cancer, hepatitis, depression, mental illness, old age, and many others. The mother of this child has written in other articles on this blog that the child had previously coded (DIED) during surgery, has had serious heart issues/surgery which could complicate the transplant during and after, has had seizures in the past (so anti-rejection meds that cause more seizures are a serious issue), is severely mentally retarded so the meds, surgery and seizures could cause her to lose what little function she has, and that she’s already immuno-comprimised which will cause serious problems when she’s put on a lifetime of immuno-suppressant meds so that she doesn’t reject the kidney.

    @regina: Your comments about the doctor, social worker and hospital are so far off base that they’re bordeline funny. Money had absolutely nothing to do with this case or any other. Too bad you didn’t research and learn that Children’s Hospitals don’t charge the families. They take what insurance will pay and if the families don’t have insurance then they absorb the cost with donations they get. Sadly, ignorant people making assinine statements on the internet will now cause the hospital to lose donations from the bad press and they’ll now not be able to heal as many sick kids. Well done (insert sarcasm here, in case you missed that!)

    @anna: This is not a pro-life issue. This is not a “Obama Care” issue. “…everyone should be alarmed when the medical community is allowed to “chose” who to provide medical service to…” Where should I even begin with your left-field statements?! Ok, you’re against abortion. Great but it has absolutely nothing to do with this situation. As for the medical community “chosing” who to give care to – that is their job. It’s why they went to an intensive and extensive program to learn HOW, WHEN, and WHAT CARE to provide. When you’ve completed the same education then you can decide too.

    @jeff stein: You’re advocating violence when someone doesn’t get their way?! How old are you?! What good does it do to physically attacking anyone who is doing their job? And this doctor didn’t create this situation because he looked at this kid and said “Nah, she ain’t worth saving cause she’s a turnip already”. And for you to say that “well these parents might’ve donated in the future to someone else but now they won’t so the doc is causing more people to die later” — I am shaking my head on that one because you apparently are not familiar with even common sense. The most stupid remark you made is to say the doctor was being evil. I can’t even type my thoughts on that because it won’t be printed. You are need of a serious reality check and an IQ boost.

    @mark grinstead: See above for response to the “eugenics/Hitler/progressive movement” crapola. If that was actually happening here, then the Children’s Hospitals would have NO patients, rather than have long waiting lists because so many special kids go there. All day long they treat kids that others gave up on. Shame on you. Yes, these doctors DO use their knowledge and existing resources for the best possible good. That’s their job. As for deciding what that good is and not God — If you believe in God then you believe he doesn’t make mistakes. That means God made these kids the way they are and nobody should give them treatment because they’d be changing God’s plan. As for “her baby isn’t equal” — nobody ever said that but don’t let the truth get in the way of your good Christain lie. These doctors are committed to helping as many people as they can. They sacrifice time they could be with their families to work late. They spend hundreds of thousands of $$$ to go to medical school then have to deal with insurance companies that don’t pay and deadbeat patients that would rather buy cigs and beer than pay a bill or they file bankruptcy so they don’t have to pay. Some surgeons in some specialities make great money but the ones who work for Children’s Hospitals do not. When you factor how many hours a week they are actually at work, then the hours they spend charting medical records, then the hours they have to spend on continuing education to keep their license, then the hours they have to spend teaching since they’re teaching hospitals, most of them make less than minimum wage. That’s why there’s been such a drop in people applying for med school. And it sure doesn’t help that once they get out of school they’ve got to deal with crap like this!!!

    To all the other nasty comments about the doctor and the hospital that I couldn’t even stomach to read: I pray you never need a doctor and if you do, then I hope they haven’t read your comments. Most of them border on libel and if I was the doctor and hospital, I would consider suing these parents for libel and slander.

  5. Walter says:

    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…

  6. Merillee Booren says:

    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.

  7. Alex says:

    WAIT- your daughter isn’t eligible, but a murderer in prison is? Who can I call, write, etc?

  8. Anonymous says:

    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.

  9. Michelle says:

    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.

  10. caroline says:

    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?

  11. Nancy says:

    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.

  12. I absolutely love the line: “I have been warned about you.”

    Parents everywhere salute you. God Bless.

  13. Amanda says:

    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.

  14. Kimberly says:

    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!!

  15. Cheryl Niehaus says:

    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.

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