CHOP to meet with parents of disabled tot needing transplant

Amelia "Mia" Rivera may be profoundly mentally challenged but, her parents say, has a chance at a life with a family that loves her, if she gets a transplant. Her situation poses an ethical dilemma. (FAMILY PHOTO)
Amelia "Mia" Rivera may be profoundly mentally challenged but, her parents say, has a chance at a life with a family that loves her, if she gets a transplant. Her situation poses an ethical dilemma. (FAMILY PHOTO)
By Tom Avril, INQUIRER STAFF WRITER
Posted: January 17, 2012

Children's Hospital of Philadelphia has agreed to meet again with the parents of a disabled South Jersey girl who say the child was rejected for a kidney transplant, sparking an Internet uproar over the weekend.

The hospital has declined to comment on the case, citing laws that require the protection of patient confidentiality.

But in an emotional blog post last week, Chrissy Rivera said the hospital refused to perform a transplant for her 3-year-old daughter, Amelia, saying she was "mentally retarded."

"In my eyes, I think it's discrimination," Rivera said in a telephone interview. She said the hospital contacted her about setting up another meeting.

Her daughter, who goes by the nickname Mia, has been diagnosed with a rare condition called Wolf-Hirschhorn Syndrome, which results in developmental delays and can also include heart and vision problems, among other symptoms. Some patients die in the first few years of life, while others have lived for decades.

In a statement, the hospital said it "does not disqualify potential transplant candidates on the basis of intellectual abilities."

"We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities," the hospital said Monday afternoon.

Chrissy Rivera said she and her husband, Joe, had gone to the hospital last week to learn about getting tested to see which family member might be a suitable kidney donor.

Instead, she said, the hospital told them they would not perform a transplant. She said she was not given a medical explanation as to why her daughter's disability would make a transplant unadvisable.

Thousands of Internet petitioners have demanded that the hospital change its decision.

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