A Philadelphia hospital is taking heat after reportedly telling one mom her daughter would not be able to receive a kidney transplant because the 3-year-old has an intellectual disability.
Chrissy Rivera wrote about her daughter’s experience at Children’s Hospital of Philadelphia in a blog post last week. Since then, more than 18,000 people have signed an online petition calling for the hospital to reverse course.
Rivera’s daughter, Amelia, has Wolf-Hirschhorn syndrome, a chromosomal disorder affecting about 1 in 50,000 people that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics.
In the posting, Rivera wrote that a doctor told her that the children’s hospital would not perform a much-needed kidney transplant because Amelia is “mentally retarded.” The doctor emphasized concerns about the girl’s quality of life given her limited cognitive abilities, according to Rivera’s account.
Rivera wrote that she protested, arguing that Amelia would likely die in six months to a year without the operation, but was unable to change the doctor’s mind.
“We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed,” Rivera wrote.
Officials at Children’s Hospital of Philadelphia said they could not speak to the Riveras’ experience specifically due to privacy laws. However, in a statement they said that they do not discriminate based on disability.
“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities,” the hospital’s statement said. “We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”
Now, it appears that the hospital — which got an earful on its Facebook page — may be changing course. USA Today reports that the Riveras have been asked to come back to the hospital to talk about a transplant.
It is unclear how common situations like the Riveras’ are. But a 2006 study from Ohio State University looking at the success of kidney transplants in those with intellectual disabilities found that survival rates were similar to those of transplant recipients with typical cognitive abilities.