PHILADELPHIA (CBSNewYork) – A southern New Jersey couple claims their daughter is being denied a life-saving kidney transplant because of her mental disabilities.
Amelia Rivera was born with a genetic abnormality called Wolf-Hirschhorn syndrome, which can cause severe developmental disabilities.
The 3-year-old had heart surgery and now her kidneys are failing.
After being referred to a transplant team, a doctor at The Children’s Hospital of Philadelphia apparently told Amelia’s parents that she is not a candidate for a transplant because of her mental disabilities.
“We were told many times throughout the meeting that she can not have the transplant because she’s considered mentally retarded,” her mother, Chrissy Rivera, said.
The family said they were also told medications after a transplant would be a problem for Amelia who takes drugs to control seizures.
“I said, ‘So you’re saying in six months to a year when her kidneys fail you want us to let her die?’ And he said yes.” Rivera said. “I was shocked, I never once thought that this was an issue.”
Rivera said after doing some research she learned that it’s common for people with developmental disabilities to not get equal treatment in the medical field.
She blogged about her experience and it quickly went viral.
The hospital was flooded with complaints and responded with a Facebook post saying it can’t comment on individual cases but did address the concerns saying, “We’re listening. We hear your concerns and take seriously your posts, emails and phone calls…Please know that you have been heard and that your feedback is appreciated.”
An official statement from Children’s Hospital says, in part, 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.”
Experts say the supply of organs for child transplants is extremely limited and most adult organs won’t fit.
Thousands of people have signed an online petition asking the Philadelphia hospital to reconsider.
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