Parents say disabled NJ girl was denied transplant

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

Chrissy Rivera, who lives in New Jersey, 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 Tuesday night, more than 22,500 people had signed Stilwell’s petition, and the hospital’s website was being swamped with complaints.

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

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 Tuesday but were not immediately returned.

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.

“Most adults can’t donate an organ, because it won’t fit” a child, Caplan said. “You’re starting to say you’re going to use another child as a living donor, and that’s ethically really trouble.”

The supply of organs for child transplants is “extremely limited,” Caplan added.

“So you have hard choices to make,” he said. “Dialysis may be a better option.”

Other symptoms of Wolf-Hirschhorn syndrome include heart defects and seizures, and it generally results in a shorter lifespan.

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