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'Mentally Retarded'? Then No Kidney for You

A hospital’s chilling denial for one little girl in need of a life-saving transplant sparks a social media outcry and campaign.

I guess being labeled ‘mentally retarded’ means you don’t deserve a life-saving kidney transplant. Seems that’s what doctors at Children’s Hospital of Philadelphia (CHoP) may have suggested in the case of one little two-year-old girl.

Amelia Rivera was born with a genetic disorder called Wolf-Hirschhorn Syndrome, which is often marked by heart or palate defects, hearing and vision impairments, seizures and certain characteristic facial and physical features. While some WHS children live into adulthood, they sometimes will not survive past the age of two.

With the condition there is always some degree of cognitive impairment and developmental retardation, terms used on the website,wolfhirschhorn.org. The site is run by parents of children with the disorder as a place to share stories and offer support and resources with one another and the public.

On the website last week, Amelia’s mother, Chrissy, posted an account of her family’s meeting with doctors at CHoP during which she and Amelia’s father, Joe, expected to hear details of how the kidney transplant Amelia needed would happen. They’d been anticipating moving forward with the transplant, understanding that Amelia needed one within six months to a year in order to live.

Instead, as Chrissy described, they sat across the table from a doctor who told them that Amelia couldn’t have a kidney transplant because she was “mentally retarded.” She wrote that the doctor told her if she continued to push the hospital for it, he would recommend to the transplant committee not to allow it.

Chrissy told of the anguished seconds that followed the doctor’s pronouncement, processing the news she had heard. She broke down at the realization that someone had decided her special needs child didn’t meet some committee’s qualifications to be saved.

Chrissy’s blog post vent viral. Thanks to Twitter, Facebook and the special needs community, thousands of people have heard Amelia’s story. USA TodayHuffington PostABC News, and countless other media outlets and blogs have carried the news. Howard Stern even got into the resulting media storm, reportedly offering to donate his own kidney on Tuesday morning’s show.

Thousands of people took up the rallying cry, demanding that CHoP reverse its decision, and asserting that neuro- and cognitive challenges shouldn’t be a reason for denying anyone a life-saving transplant. The special needs community has been particularly vocal. One Twitter user, Sunday Stilwell (@xtremeparnthood) — a parent of two children with autism herself — organized achange.org petition urging CHoP to reconsider and allow Amelia to have a transplant. As of my writing deadline, the petition has more than 21,000 signatures.

Since Chrissy’s original post spread like wildfire, part of the ensuing discussion has been about theethics of organ donations: whether an individual who can’t take care of herself and whose quality of life might not be as high should be on the transplant list. Others wrote about eugenics — that no one has a right to decide who is worthy of saving and who isn’t.

Lesser than… not deserving of… not worth it. Is this what the antiquated term ‘mentally retarded’ has now come to mean?

Sure, there’s the argument that the terminology the hospital was using with the Rivera’s was strictly medical. In fact, Chrissy’s side of the story of events during the meeting is the only side represented in the coverage — it’s he-said-she-said as to whether “mental retardation” was really the only reason used for denying Amelia a transplant. Meanwhile, the hospital says it can’t comment directly to preserve patient confidentiality.

The hospital did release a statement on its own Facebook page:

“We hear you. We feel and understand your frustration… Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family…We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way. The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”

Now comes news that CHoP has reached out to the Riveras to potentially discuss allowing a private, inter-family organ donation — one in which the kidney match would be made from one of Amelia’s own family members. That’s something Chrissy has reportedly said they had always assumed would be the case.

What’s to learn from witnessing this? Primarily, this event has further raised the issue of how special needs individuals are regarded: whether terms like ‘retarded’ need to be retired and that we as a society need to re-examine how we value those whose abilities are different from what is typically regarded as mainstream or ‘normal.’

Stilwell, the awareness campaign leader, tweeted to me that Amelia’s parents also wanted to make sure that what happened to them wouldn’t ever happen to another special needs family. The key to that is taking away those kinds of past-held stereotypes and discriminations.

We all are different. We are all imperfect, which is what makes us true perfection. I know this issue of organ transplant can potentially be an ethical minefield, but no child should be denied the chance at life on the basis that he or she isn’t ‘normal’ enough.

According to the interview her mom gave to USA Today, Amelia may “not talk or walk, but she does smile, play, roll around on the floor, interact with people and ‘love her two brothers to pieces … She's a magnet when people meet her.’"

She’s a person deserving of love, support and the chance to survive. She deserves a future.

You can follow the Twitter campaign at #TeamAmelia. Please also consider becoming an organ donor—learn more at organdonor.gov.

MFN January 20, 2012 at 01:01 PM
Heather, this is an excellent article. Thank you for your perspective.
Jlo January 20, 2012 at 03:32 PM
I posted the below last night but I guess it ended up on some other towns patch but I think it bears repeating here. ----------------------------------- I'm sorry if this sounds cruel but the hospital made the right decision. This girl was dealt a terrible hand and she has a very poor prognosis for long term survival even with a healthy kidney. Candidates for transplant are typically otherwise healthy people for whom removing the diseased organ will cure them or significantly increase their chance of survival. Giving this poor girl a new kidney is not going to fix her problems, which go far beyond her mental function. The other thing to consider is that you are risking two lives doing this operation, the girl or the donor could both have complications and die from the surgery. The girl could also be severely effected by the anti rejection drugs. The mother sounds like she is in a bit of denial about the severity of her daughters condition. This might be her clinging to any hope she can find but it could just as easily be the doctors handling her with kid gloves and not wanting to tell her that her daughter is not long for this earth. Its a horrible situation and the doctor should have been a bit more thoughtful in his choice of words but he made the right decision medically. I guess in his eyes saying your daughter is retarded was easier than saying your daughter will be dead before shes 10. The mother can and should seek a second opinion though.
jennifer iannuzzi January 30, 2012 at 01:05 AM
Somehow I missed this article last week. First thank you Heather for your wonderful perspective and for sharing this story. Jlo, I feel compelled to respond to your post. I do agree that transplant patients need to meet a certain criteria before receiving an organ; however, in this case a family member was willing to donate the kidney and the mother was very aware of the potential risks and consequences of the procedure. She simply wanted to make her daughter more comfortable. And truthfully no one has any idea how long this little girl could live. According to the specifics of the syndrome she should have died already. I do not believe for a minute that this mother is living in denial, in fact she is living in the moment and not worrying about the future. As a mother of a child with special needs we are often misunderstood as being in denial when what we are really doing is focusing on the moment that we are in because the future is full of uncertainty. This little girl as well as the family member donating the organ has every right to make this decision as they are not affecting anyone else waiting for the organ. The doctor simply does not have the right to determine what is her "quality of life" In my opinion, in this case. it is completely subjective.

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