Hospital: No Kidney Transplant For Girl With Disabilities

Parents of children with disabilities and disability rights advocates are raising a huge outcry after a doctor at the Children’s Hospital of Philadelphia (CHOP) denied 2-year-old Amelia, who has Wolf-Hirschorn Syndrome, a kidney transplant. Wolf-Hirschorn Syndrome is a genetic condition occurring in 1 in 50,000 individuals; those with it have a “characteristic facial appearance, delayed growth and development, intellectual disability, and seizures.”

In a post entitled Brick Walls, Chrissy Rivera, Amelia’s mother, writes that her daughter’s doctor had told them that she would need a kidney transplant in 6 months to a year. Rivera then describes how another doctor accompanied by a social worker told her and her husband, Joe — Amelia had fallen asleep in her stroller — that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.” Rivera recounts a very painful exchange that followed during which she said:

“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!”

Terri Mauro at the About.com blog on special needs children and Ellen Seidman at Love That Max are among those who have expressed shock at the denial of a necessary medical procedure for Amelia due to her disabiliity. Seidman cites a 2006 study according to which “before the ’90s, transplants were considered inadvisable for those with cognitive impairments” and also a 2004 questionnaire that The Arc (the US’s largest parent organization for individuals with developmental and intellectual disabilities) sent to members that found that “80 percent of people believed that those with cognitive disabilities are discriminated against when it comes to to organ transplant operations.”

CHOP has issued a statement on its Facebook page in which the hospital says that

We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

The statement also says that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.”

This is all very reasonable — and, not surprisingly, parents are responding that it’s all (as it is) “empty words” and a “bunch of backside-covering PR-speak.” Elizabeth Aquino points out that CHOP is violating the United Nations Convention on the Rights of Persons with Disabilities. Article 25 on health says that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

You do have to wonder what’s going on when a hospital — when the medical profession — denies a life-saving medical procedure for a child with disabilities.

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Photo by Jeffrey N. Vinokur via Wikimedia Commons

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joe M.

6:28PM PST on Feb 2, 2012

Eternal: There has been a change. Public opinion has won and CHOP has agreed to give the child a kidney, however, there extreme doubt that child prevailing poor health will prevent her from receiving the needed kidney. In other words medical profession feel that she will not survive the surgery. Apparently she has a failing heart also.

send a green star

Eternal G.

6:18PM PST on Feb 2, 2012

Noted.

Elizabeth K.

6:08PM PST on Jan 22, 2012

For heaven's sake, people, y'all talk as if money grows on trees! It doesn't! Our resources are not unlimited. Even if private insurance paid for the operation, everybody's premiums will go up to accommodate all these foolish operations. Tell me, all of you, how much money should be spent on this child? Is there a limit? If so, why should there be a limit? You all talk as if limits are all sinful.

federico b.

6:52AM PST on Jan 21, 2012

e' una vergogna...

Patricia M.

4:46AM PST on Jan 21, 2012

There may be more facts about the case that we do not know. If the denial is because the two year old girl is mentally retarded, the doctors better reread their oath again. The better make sure they are making their decision for the right reasons. This little girl deserves the chance to live a healthier life the same as everyone else.

KS G.

12:20AM PST on Jan 21, 2012

Thanks for the article.

Suzanne L.

10:29AM PST on Jan 20, 2012

Perhaps we do not know all the facts. Roxanne N's comment makes sense to me.

Mark S.

3:02AM PST on Jan 20, 2012

By denying the transplant, and the girl dies, then they have committed manslaughter.

Roxanne N.

6:36PM PST on Jan 19, 2012

One more point--I highly doubt that anyone told the mother that the girl would be ineligible for a transplant from a living/family donor. Really, I can't imagine the doctors telling her that. They just may have tried to point out the rigors of surgery for a child in her condition, and the aftermath of caring for her--and this family may just not be able to handle it. I would guess that is the underlying story. But I think they would go ahead with a family donor, if the parents insisted. Or try another facility.

At any rate, this article is a jumbled mess, and we know extremely little about the real circumstances, and again, the author leaves out all of the vital info about transplants.

6:27PM PST on Jan 19, 2012

Many Care2 articles have a bad habit of giving half a story, with a very slanted bias. Like this one. Obviously the author did not bother to do a little research about transplants, and is just parroting what has already been sensationalized in the mass media. Not everyone who needs a transplant gets one! The reason is primarily a severe shortage of organ! There are about 80,000 people on the waiting list for a kidney. Yes, and less than half of them will end up with a transplant.

Second, many people are deemed ineligible for transplants if they have other medical problems, such as seems to be the case with this girl. Organs are valuable, and they are transplanted into people who have the best chance of success, and in keeping to the regimen that follows--it doesn't end with the transplant. The surgery is intense and then you are on immunosuppressant drugs for the rest of your life.

This article is ridiculous, as none of this is mentioned. And I highly doubt that is what the doctors at CHOP said. The parents have heard only what they want to hear, and their daughter is not "entitled" to a kidney. She has to go through the same approval criteria as everyone else, and if approved, be put on the waiting list. And it sounds perfectly legitimate that this girl would be turned down, as this syndrome comes with a lot of medical and developmental problems, in addition to mental retardation.