- Associated Press - Wednesday, January 18, 2012

PHILADELPHIA (AP) - The parents of a 3-year-old New Jersey girl say she’s being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.

The girl’s mother, Chrissy Rivera, last week posted a blog entry that described an encounter she claimed happened at The Children’s Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.

Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.

“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?’” she wrote. “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.”


Rivera’s story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she began an online petition last Friday, demanding that the hospital give a transplant to the girl. By Wednesday morning, nearly 25,600 people had signed it.

“I read Chrissy’s original blog post, and I just cried. I couldn’t believe it,” said Stilwell, whose boys are 6 and 9. “I shared it on Twitter with all my followers and on Facebook.”

Children’s Hospital said in a statement that 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,” it said, adding that it is “deeply committed” to providing the best possible medical care for all children, including those with disabilities.

The hospital did not comment further, citing patient confidentiality laws, but noted the debate on its Facebook page.

“We’re listening. We hear your concerns and take seriously your posts, emails and phone calls,” it wrote, adding, “Please know that you have been heard and that your feedback is appreciated.”

Stilwell has been in contact with Rivera daily over the events.

“There’s a lot of camaraderie” between parents of special-needs kids, Stilwell said. “Almost all of us, across the board, have experienced some discrimination. I’ve certainly had some bad run-ins with some certainly ignorant doctors, but nothing like this. That’s part of the reason I did it. I couldn’t actually believe this was happening.”

Messages seeking comment from the Riveras through Facebook and to their home were left Wednesday.

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

For example, the blog notes that Rivera told the hospital that “we plan on donating” the kidney, since they come from a large family.

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