Denied A Transplant

Amelia is a 2 yr old girl who has Wolf Hirshorn syndrome. I hadn't heard of this syndrome before today. I don't know what it entails, nor do I know the back story of Amelia. All I know is the blog post from her mom saying that Amelia will need a kidney transplant in about 6 months to a year.

The Nephrology doctor told them he wouldn't recommend she get the transplant because she is mentally retarded. He says she will never get on the waiting list because of that.

The parents say that isn't a problem; when the time comes one of them plan on donating. And if neither of them are a match they have a large family and someone will donate.

The doctor says that still doesn't matter. To quote from the blog post, "“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing."

I can't believe a child would be denied an organ transplant because of their cognitive delay. How does that make their quality of life any less? How does that make them any less deserving of a chance to continue with their life?

I didn't realize this wasn't unusual. Since the story broke on FB I have seen several comments from parents with children with Down syndrome say they were told the same thing about if their child needed a transplant - they wouldn't be eligible.

How can that even be legal?

It reminded me of the Baby Doe case. Although that was reverse in that the parents didn't want the life-saving surgery for their son and the doctors actually did. Baby Doe, who had Down syndrome, was born with esophageal atresia. Surgery would attach his esophagus but his parents elected not to have the surgery performed. Without the surgery Baby Doe died.

Reading more on the Baby Doe law I see that it was amended in 1984 to include children, not just newborns. Specifically stating, "the amendment extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from disabled children."

Based on the wording in that law I don't see how Amelia, or any child with a cognitive disability, could be denied a transplant - isn't a transplant considered "medically indicated treatment?"


A petition has been started asking CHOP to allow the transplant to happen. I signed it, but after the meeting with that doctor and social worker, I think I'd rather have my child's transplant happen at another hospital.