Mom: Transplant denied due to "mental retardation"

January 18, 2012 5:41:29 AM PST
Chrissy and Joe Rivera of Stratford, New Jersey, were shocked when they say a doctor at Children's Hospital of Philadelphia told them their 3-year-old daughter Amelia, affectionately known as Mia, couldn't get a kidney transplant even though she needs it to survive.

"He had told us she wasn't eligible for a transplant because of her 'mental retardation,' was the word he used," Chrissy said.

"It was upsetting and I think it was handled the wrong way," Joe said.

Mia has Wolf-Hirschhorn Syndrome. It is a rare genetic condition that affects her mentally and physically. She can't walk or talk, but does communicate with her eyes and smile.

"We just love her. She is part of the family. She's just like any other child in any other family," Chrissy said.

The Riveras posted their story online. It sparked outrage from other parents saying the hospital is discriminating. Tens of thousands of people also signed a petition urging CHOP to allow Mia the transplant.

A spokesperson for CHOP says they cannot comment due to privacy laws, but did release this statement, in part saying: "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities."

Art Caplan, a bioethicist for the University of Pennsylvania, also cannot comment on specifics of the case, but says in this situation, you have to sort out mental ability.

"If that's all that is being taken into account, that's bias, that's discriminatory, but if it's a genetic disease that has many other complications, that's medically appropriate and not at all unethical," Caplan said.

The Riveras tell Action News CHOP has reached out to them. They will meet again to discuss the situation. The couple says if they have to, they will go to another hospital.