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Petition Asks Children's Hospital of Philadelphia to Allow Kidney Transplant to Disabled Child

You have likely heard of the child Amelia who has Wolf-Hirschhorn Syndrome and has been denied a life saving kidney transplant by Children's Hospital of Philadelphia.  Below is her mother's heart wrenching blog entry about the doctor's visit.   So, a few things about this story:

1) There is a petition ask CHOP to reconsider Children's Hospital of Philadelphia: Allow the kidney transplant Amelia needs to survive

2) You can comment at the original blog entry "Brick Walls" by CRivera75 at the Wolf-Hirshorn Syndrome sight.

Is this an example of healthcare rationing? Eugenics? Simple economic return on investment (I'm shuddering)?  If this were your child, would her life be worth saving or would you pass on the kidney, hoping it would go to an A student who lives in Philly's prestigious Main Line, might attend Princeton and become a doctor or lawyer?  And if you'll allow me a moment of snark, do you think they let the poor child out the door without a flu shot?  K

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.

Comments

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Vanessa Leonard

First and foremost I want to express my deep apologies for what you and your family are going through. I myself am in the medical field and I do have to say 2 things. First and foremost, regardless of the fact your daughter is Mentally Retarded, no doctor, nurse, social worker, NOBODY should tell you about her quality of life because "mothers know best". Nobody can tell you how to feel or what to do. Unfortunately in the medical field, Doctors see cases such as Amelia's often, yet not as often as a "common transplant" case. Unfortunately they are trained to give you the facts and not sugar coat words and say what you necessarily want to hear. But, there are Doctors that have a great bed-side manner and ones that don't (as I'm sure you're aware). Secondly, regardless of the fact that CHOP is a phenomenal children's hospital, it is NOT the only hospital and it is not the only top hospital. At this point in time it has been made clear to your family that regardless of the steps you take or whom you speak with, the transplant team has the final say. Now I know that's not easy to hear, but unfortunately it is a hard truth and no matter how many petitions you create, it may not give you the result you're looking for. But, if by some fact it does, do you really want the future of your daughters life in the hands of these heartless people? I work at New York Presbyterian Morgan Stanley Children's Hospital in Manhattan, NY (a/k/a CHONY) we rank as high if not higher than CHOP so I assure you the care will be as good if not better. You may want to research my hospital and consider transferring Amelia's care to a hospital in which you may get the answers and results you and your family are hoping and praying for. Every individual deserves the same chance at life, mentally retarded or not. By no means am I suggesting you stop fighting, but please consider transferring your daughters care to someone who may be willing and able to help you.

Kevin

I run the wolfhirschhorn.org community and there are many other stories that support the lack of education in the medical field. If you read through the comments on the original article, it's a common occurrence...

Rita Burke

From Rita Burke, a friend in Illinois. I am president of a state-wide family/guardian organization. Illinois does not value its citizens with mental retardation and developmental disabilities. Our services are so under-funded, inadequate and in competition with each other to serve the wide range of disabilities. Please let us know who to contact or what petition to sign to support Amelia. Best wishes to you and Amelia. Keep us posted.

nancy Harrington

this is horrible. I have a beautiful little grandaughter who has autism but all the people who come in contact with her know by her actions that she is very intelligent and simply cannot speak. she knows what she wants to say just cant say it and becomes very distressed because she cant communicate. the next thing we know it will be determined that she doesnt need help because som dr. thinks she isnt deserving. I can guarantee you if it were his family member he would do anything he could to assure a quality life for her. Who are they to say someone doesnt deserve all the help there is out there for these children.

Christine Castonguay

I have a grandson who has autism. When I read this story I became sick to my stomach. To refuse to treat a disabled child by different rules, is absolutely disgusting and most probably against the law. What about their civil rights? My daughter has fought many battles for my grandson Tommy over the past 12 years. I will pray for Amelia to receive the care she deserves.

Sarah


Like Amelia's parents, autism parents are being discriminated against too when it comes to receiving medical treatment for our kids. Simply because our kids carry an autism diagnosis, treatment for GI issues and brain inflammation for example is being denied by the many mainstream doctors. There are rare exceptions like Dr. Buie at MGH. I personally know how feels to have the door slammed shut on treatment.

Let me share my experience...

Last year, I tried to get an app't for my son to see a neuro-immunologist at Children's Hospital in Boston and was "declined". Within an hour of Children's declining my request, I got a call from staff at the Children's Autism Genome project asking if I was still interested in participating. My sons genetic code, mine and my husbands would be put in a genomic disease registry. I declined. No way will I give them my sons genetic information to them. I will not let them have a genetic basis for discriminating against him in the future afterall what if he desperately needs an organ transplant someday and they discover he is in the autism registry? No way.

I share this story because we should all think long and hard about disclosing or registering any genetic information on our kids or ourselves. With all the emphasis in medicine on genetics, we could be inadvertently setting our kids up for discrimination in the future much like these parents have experienced.


Shelly

The doctor states "I've been warned about you....". Make no mistake, that statement should put all parents on notice. The "Nancy Snyderman" attitude towards parents is permeating not only the medical system but our school systems as well. To think this is America in 2012 - sickening to say the least.

Ephesians 6:12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.

Pamela

ATTN: Amelia's Mom...there is a registry of doctors who have performed transplants for individuals with "MR". For details and contact information go here. http://researchnews.osu.edu/archive/orgtrans.htm

Pamela

Two important things for Amelia's parents.....First, a study (released July '11) regarding the success of transplants in persons with Mental Retardation shows that transplants are just as successful as in the general population. 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 a "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.

oneVoice

This is a discrimination based on intellectual disability.
Put in a written complaints to the hospital.The doctors are not Gods to decide who lives or who dies.Their job is to provide care and to FIND solutions.What kind of society is this that neglects the weakest members of the
family - a disabled child.Send letters of complaint to the
local tv,radio stations and newspapers.We have to fight for
our children to make sure that they get the proper care they deserve.

HFAmomto3HFAgirls

Rest assured, if you have been under the assumption that our children would receive healthcare determined by 'officials' and it would be what you *expected* them to receive you're in for a big shock.

Did you really think the system that injured your children could be relied on to fix them? of anything?

This will mean:

no ICU bed for your ASD child if your family is in a car crash
no burn unit bed if your child is badly burned
no chemo if your lovely 'high functioning' child comes down with leukemia
no transplants of any kind

whether or not your *other* children receive 'infertility' treatment or care isn't a sure thing either. Because we all know (chorus now!) 'it's genetic'.

Our only 'win' in this is our numbers. They've simply created *so* *many* damaged children there will be a public outcry should this type of thing become common.

However, most 'medical ethics' classes I've been familiar with for the past 30+ years have included 'quality of life' in their discussions. So all the MD's under 60 are primed and ready to go with this protocol of eliminating 'life unworthy of life'.

Yes, the Peruvian doctor DID tell the mother and father that. Her daughter's life is unworthy of life. He probably never even really looked the child in the face. Not one time.

Life unworthy of life. Get ready for that statement to be applied to our children.

Enlightened

The newest generation of "mentally retarded" were not born that way. They were poisoned. After 13 years of avoiding doctors and doing my own research, changing my son's diet and adding supplements, he is no longer classified as "retarded". He is a talented and smart young man age 17, who can argue better than a lawyer, debate better than any politician, and he can draw masterpiece sketches in less than an hour, coveted by teachers and all who see them. I'll be submitting some of the pieces to my former English Professor who is now a distinguished author, in hopes of my son becoming his premier illustrator. The school "shrink" sees no sign of autism anymore. I tell each and every one of you, there is hope! Never give up and don't trust doctors.

cmo

Is CHOPS not the birthplace of the "now banned" lifesaving vaccine wonder "Rotashield" by Dr. Offit ???

If the vaccine was given to 100 children and 6 of them died... would that not mean they saved 94 lives ?

johanna carrion

You have to go to the press and the TV and put your case out... Someone will help you!

johanna carrion

Wow, I cannot believe something like this is happening. What a horrible thing for a parent to hear. Yeah, we cannot help her because she is delayed. Wow, I'm in shock that a medical team of a children hospital could be so inhumane. I'm going to sign your petition and if there is anyway my family and me could help let me know. Johanna

Sarah

I've said it before and I'll say it again. A eugenics agenda is driving this train. Eugenicists have hijacked medicine. From the day our children are born, the eugenicists have laid out a genetic road map as to who will succeed and who will not. "Know the signs" code words for "genetically unfit". In this child's case, who will live and who will die. The doctors involved in this little girls case are criminals. They are blatantingly discriminating based on this child's disability. I hope these parents file a lawsuit against CHOPS and if this child dies because of being denied a transplant, her parents should file criminal charges. Include that sadistic bitch "social worker" in the lawsuit.

We can expose these monsters, share this mothers story with everyone you know.

Cassandra

I am not surprised that this happened at CHOP, home of Paul Offit, Art Caplan...

How many kids become brain damaged by vaccines and then end up needing a transplant due to organ failure caused by the same vaccines, and denied care by the same people who inflicted the damage the first place...

Stop big harma

“I have been warned about you. About how involved you and your family are with Amelia.”


From CHOP - the land of Paul Offit. Why does this not surprise me?

Benedetta

Bob Moffitt
That was the first thought that came to my mind,too when I read this.
What is really disturbing is their attitude. They openly stated the reason was mental delays!!!!!

So what is the cut off point for IQs?

What was that famous speech about different religions.
First they came for those whose IQs that were under 30, but since I was not around an IQ of 30 I said nothing.

Next they came for those whose IQs were 70, but I was not an IQ of 70 so I said nothing

---on and on and on untill they came for me, and no one was left to speak for me. .

Bob Moffitt

You can rest assured that I am extremely "disturbed, troubles, distressed and pissed off" after reading your comments.

A similar decision by some annonymous "committee" is exactly how the holocaust began.


First .. Germany gave permission for doctors to eliminate the "severely mentally retarded" .. which quickly morphed into permitting doctors to sacrifice those whose "quality of life" was questioned .. eventually becoming permission for doctors and others to eliminate the weakest (useless eaters) among them .. by unleashing the "final solution" .. which resulted in the elimination of millions based solely upon their religion and ethnicity.

I am curious if the doctor quoted in these comments would approve using the kidney of a "mentally retarded" individual to save a life of an individual the doctor believed to be "more productive"?


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