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/.
Donate to the wolfhirschhorn.org community.
878 Responses to Brick Walls
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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.