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01/17/2012

Rallying Around Amelia: A Debate on Disability

The blogosphere and the airwaves are filled with indignation regarding what has happened to Amelia Rivera, a three year old who has a rare genetic disorder called Wolf-Hirschhorn syndrome. Amelia needs a kidney transplant, but physicians at Children’s Hospital of Philadelphia have denied her access due to her mental impairment. The discussion held in a conference room at the hospital is recounted in detail by Amelia’s mother, Chrissy, on her blog.

Parents of special needs children around the world are outraged not only for Amelia but at the notion that health care providers, even at one of the best children’s hospitals in the world, might arbitrarily decide to deny children treatment on the basis of their mental status. According to USA Today, as of last night the following had happened:

More than 16,000 signatures have been added to an online petition at change.org demanding the hospital allow the transplant.
Hundreds of complaints — along with some supportive comments for hospital staff — have been left at the CHOP Facebook page.
More than two dozen bloggers, many of them parents of other children with disabilities, have put up posts supporting the Riveras and criticizing the hospital.
Tweets using the hashtag #teamamelia continue to spread the story.

But the story is not just “potentially very disturbing” as David Magnus has described it. But very disturbing indeed. It is hard to believe that anyone would cite “quality of life” arguments to parents of a toddler who will die without the transplant. Furthermore, worries about “who will care for Amelia 30 years from now” are irrelevant. Her survival is at stake. Her need for a second transplant is neither morally or practically relevant to the decision about the first transplant.

Either a person, old or young, disabled or not, is medically suitable for a transplant or they are not. Psychosocial factors such as social support are relevant, but that is not the same as mental status being a deciding criterion.

Whether there exist other factors in her medical history that make her unlikely to be a successful candidate for transplant has not been disclosed. But one would think that if there were any other reason to deny a three-year-old a transplant, it would have been mentioned first by the physicians. None were discussed.

CHOP has come under significant fire for its physician’s decision receiving an online barrage of complaints. As it should have. It strains credulity for this hospital to say it does not discriminate ‘in any way’. Perhaps hospital policy does not, but at least a few of its employees clearly do. Whether these staff will be enlightened and/or reprimanded remains to be seen. But someone needs to do something. Or the life of a very sick little girl will be lost due to prejudice against those with mental disabilities.

Summer Johnson McGee, PhD

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