Bioethicist: Transplant Denial For Mentally Disabled Child Raises Questions

Wed, 01/18/2012 - 5:08am
Art Caplan, Ph.D.

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 a recent blog post written by her mother, Chrissy Rivera, her parents have been told by her doctor and social worker that she 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.”

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