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Should a 3-year-old mentally handicapped girl be turned down for a kidney transplant?

January 18, 2012 - Andrea Johnson
Should a 3-year-old New Jersey with developmental disabilities be denied a kidney transplant?

According to an Associated Press article, her parents, Joe and Chrissy Rivera, claim that a doctor at The Children's Hospital of Philadelphia told them that their daughter, Amelia, wasn't a candidate for a transplant because of her quality of life and mental condition.

Her mother wrote in a blog entry:

"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? 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."

Amelia was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. She will need a kidney transplant in six months or a year.

Chrissy Rivera's blog entry inspired an online petition demanding the hospital give the girl a transplant. It has been signed by nearly 27,000 people so far. Doctors quoted in the article said the issues might be more complex than they appear and the hospital might not be able to give its side of the story due to medical privacy laws.

The family says they plan to use a living donor from within their own family for Amelia's kidney transplant, so no one else on a transplant list would be deprived of a kidney. However, a medical ethicist quoted in the story said that disabilities and the the scarcity of available organs are issues that are considered by transplant programs across the country.

If there are only so many organs available, rationing will be required. Transplant programs will want to ensure that the kidney goes to the person who's likely to live the longest. The AP story notes that the one and three year survival rates for people with mental disabilities who received kidney transplants were 100 and 90 percent, respectively, in one 2006 study. That was largely due to strong family support. A transplant program would have to weigh the chance that a patient will be able to comply with the stringent medication regimen. The patient's health prior to the transplant would also be a factor.

But I also wonder if the Riveras' doctor looked at this little girl, who was seen in TV footage sitting between her parents, giggling and happy, and decided her life is not as worthy as that of a 3-year-old on the kidney transplant list who has normal intelligence.

Given a choice, which one would most transplant committees save? And what can we do as a society to ensure that there are enough donated organs available so this is a choice they don't have to make?


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