South Jersey woman says daughter was denied transplant because of mental disability

A South Jersey woman is fighting the Children’s Hospital of Philadelphia on a recommendation to deny her three-year-old daughter a kidney transplant.

Chrissy Rivera said a CHOP doctor told her in a meeting last week he would not recommend her daughter for a transplant because she has Wolf-Hirschorn syndrome, which causes delayed growth and physical and intellectual disability.

“We were shocked,” said Rivera. “We thought we were going into a meeting to learn about what happens in a transplant and we were told she wasn’t eligible.”

CHOP cannot comment on Rivera’s case due to confidentiality rules, but in a statement wrote, “The Children’s Hospital of Philadelphia does not qualify 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.”

A blog post Rivera wrote about the meeting has been widely re-posted, and an online petition pushing CHOP to re-consider had more than 16,000 signatures as of late Monday afternoon.

For doctors, transplant eligibility for those with mental disabilities is seen in shades of gray, not the same black and white terms as for many online commentators.

“There are no national standards in that regard, it really is a transplant center by transplant center decision,” said Dr. Michael Shapiro, chief of organ transplantation at Hackensack University Medical Center and former chair of the UNOS ethics committee.

He said when determining eligibility for kidney transplants for mentally disabled adults, doctors would consider whether patients could take their post-transplant medication reliably, or have a support system to ensure they would.

For kids, that kind of care is always the job of the parents.

So Shapiro said the question becomes one of quality of life: how much better would life be for the child if he or she got the transplant rather than going on dialysis?

“There are some children who are so severely cognitively impaired that it’s hard to understand what the benefit would be of doing a transplant,” Shapiro said. “There are other children who have mild to moderate cognitive impairments who should not be denied a transplant solely on those bases.”

Chrissy Rivera said since she blogged about her meeting, a representative from the hospital apologized to her about how it was handled and said they would meet again to discuss treatment options.