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Family to meet with hospital in transplant debate
PHILADELPHIA (AP) - The parents of a 3-year-old New Jersey girl who claim she’s being denied a kidney transplant because of her mental disabilities say they will meet with hospital officials next week. The claim has caused a furor online but experts warn the situation may be much more complex.
Joe Rivera said Wednesday that he and his wife, Chrissy, spoke with officials from The Children's Hospital of Philadelphia on a Sunday night conference call. A blog posting a few days earlier claimed their daughter, Amelia, was denied a kidney transplant because she suffers from Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Children’s Hospital has said that it “does not disqualify potential transplant candidates on the basis of intellectual abilities” but declined to comment about the meeting, citing patient confidentiality rules.
THIS IS A BREAKING NEWS UPDATE. Check back soon for further information. AP’s earlier story is below.
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.
“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.
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.”
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