Pregnancy

Disabled Toddler Denied Transplant Because She’s Disabled, Says Mother

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heart and hospital crossChrissy Rivera, a mother to a three-year-old with a rare genetic defect that can cause physical and mental disabilities, took to her blog recently to recount an alarming conversation she had with one of her daughter’s doctors. The mother had arrived at The Children’s Hospital of Philadelphia to discuss treatment for her daughter, Amelia, and a possible kidney transplant. And according to Chrissy’s blog, her daughter was told that she was ineligible for said transplant because of her quality of life or mental condition — more specifically, because she was “retarded.”

The mother recently wrote:

“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.”

Fellow mothers read the post and, Sunday Stilwell, another mother of children with special needs immediately started an online petition demanding that the hospital consider her for a transplant. The petition garnered nearly 26,000 signatures in four days.

The hospital denied the claims as CBS  reports that the facility released a statement saying that it “does not disqualify potential transplant candidates on the basis of intellectual abilities.” But the hospital has declined to release any further details regarding Amelia as they are bound by patient confidentiality laws.

Stilwell, who has two autistic sons, told CBS that the reason so many parents reacted to Amelia’s story is that her scenario highlights well the discrimination kids with special needs endure at every turn, specifically by doctors:

“Almost all of us, across the board, have experienced some discrimination. I’ve certainly had some bad run-ins with some certainly ignorant doctors, but nothing like this. That’s part of the reason I [started the petition]. I couldn’t actually believe this was happening.”

The situation is further complicated by the viability of transplanting a kidney to a child with a weakened  immune system, as is often the case with Wolf-Hirschhorn syndrome like Amelia. Organ transplants for children are already difficult to come by given that generally speaking, you can’t place an adult’s organ into a child. The hospital understandably wants to ensure that they use what few organs they do have efficiently and that these precious resources are not squandered. But even so, turning away an ill child because the odds aren’t in their favor is completely unjust, to both children and their families.

A professor at the University of Pittsburgh Medical Center told the news outlet that Amelia’s denial, should the claims be true, is nothing new as  “the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.” Given Chrissy’s claims, most physicians and hospitals would hopefully backtrack from such an incendiary statement about a child’s quality of life. But given how active mothers are on the Twitter machine and blogs these days, there is little a modern physician can say about special-needs kids that won’t come to light.

(photo: Shutterstock)