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Serious issues in disabled girl transplant case

Three-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, epileptic-like seizures and kidney failure. In the future, it's very likely she’ll need a transplant.

But, according to her parents, Amelia's mental disabilities are the reason she's being denied  the kidney transplant. Her parents told the Associated Press Wednesday that the decision is being determined by a doctor with The Children's Hospital of Philadelphia.

AP

The parents of 3-year-old Amelia Rivera, claim she is being denied a kidney transplant because of her mental disabilities.

"It's one doctor who's never seen us who is making this call," the father, Joe Rivera, told the Associated Press.

In a recent blog post written by her mother, Chrissy Rivera says they were told by her doctor and social worker that Amelia would not be a candidate for a transplant because of her mental disability, not even if a family member donates a kidney.

In the blog post, Rivera recounts this exchange with the doctor when she heard the news:

“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, [said the doctor]. This is hard for me, you know.”

The blog post sparked an online firestorm -- including more than 15,000 signatures on a petition demanding that the decision be reconsidered by the Children’s Hospital of Philadelphia, an affiliate of the University of Pennsylvania where I work. 

In response to the uproar, the child's parents are planning to meet with hospital officials next week, according to AP.

The issue of disability and access to a life-saving transplant merits serious reflection.

Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier.

Those being considered for a transplant must be able to comply with what is required after a transplant — taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney. This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding.

Transplant teams also think about the chance for long-term survival, especially when a scarce cadaver kidney is involved. Some severe mental disabilities are linked to genetic problems that create other daunting physical challenges -- bad hearts, severe diabetes, malformed organs, etc., which can drastically shorten lifespan.

Because of that, some transplant programs don't consider operating on those who are facing significantly shortened lives on the grounds that the need for transplants among kids is huge and the scarce supply of cadaver kidneys should be used to save the most lives and the most years of life.

It’s even more complicated when the patient is a very disabled person who resides in a care facility. A child who is immunosuppressed, whose bodily defenses are knocked out to permit the transplant to work, will be put at huge risk of getting a deadly infection if she lives in an institution.

Each transplant case involving a disabled person has to be looked at individually.  All that said, children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected.  And in 1990 Congress passed the Americans with Disabilities Act  which prohibits discriminating against patients solely on the basis of a disability.

There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant.  But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.

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