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.
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.