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 said their problems may be with one doctor, and not The Children's Hospital of Philadelphia.
“It’s one doctor who’s never seen us who is making this call,” Joe Rivera told The Associated Press on Wednesday. “We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”
Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child’s case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that “we hear your concerns.”
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children's Hospital. She and her husband were 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. Amelia will need a transplant in six months to a year.
Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband 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.”
Joe Rivera said he was left thunderstruck.
“It just felt like that you were punched in the gut,” he told the AP. “It was mind blowing how people think these days.”
But he said that the experience was not necessarily indicative of the treatment they’ve gotten from the hospital.
Afterward, Chrissy Rivera, who teaches high school senior English, detailed the exchange on the blog.
Her story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she began an online petition Friday, demanding that the hospital give a transplant to the girl. By Wednesday afternoon, 26,520 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.
It 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.”View Entire Story
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