Latina child denied transplant because of mental disability

In a heartbreaking turn of events, a New Jersey area girl has apparently been denied a kidney transplant at the Children's Hospital of Philadelphia because of her disabilities. The saddest part of this story however, may be that it is a shockingly common occurrence for mentally disabled patients to be denied necessary organ transplants because of their "quality of life" or presumed lack thereof.

Amelia Rivera, 3, was taken to the The Children's Hospital of Philadelphia on January 10, 2012 by her parents, Chrissy and Joe for a routine appointment with her doctors and to talk about future treatment for their daughter. Amelia was born with Wolf-Hirschhorn syndrome a genetic disease that can cause many different kinds of physical, developmental and mental disabilities. Here is where the story gets downright enraging...

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Chrissy says that when she met with a surgeon and a social worker at the hospital to talk about a kidney transplant that Amelia doctor's suggested she would need in 6 months to a year, she was told repeatedly that because Amelia is "mentally retarded" she would not be able to have the transplant--even if someone from her own family was willing to donate the organ. Rivera says that the doctor and social worker insisted Amelia would not be eligible because of her mental delays and the quality of her life.

Essentially, this surgeon apparently decided to play God when it came to little Amelia's life and decided that it would not be worth saving. I'm not even sure what kind of reaction to have to this. It seems like a gross injustice and sorry statement on the value our society puts on the lives of the disabled. Then it got worse for me, because after doing just a minimal amount of research, it turns out that mentally disabled children and adults have been fighting for years to prove that they should be considered as adequate candidates to receive organ transplants. How is this even acceptable?

It boggles my mind that there could be any sort of justifiable or ethically sound reasoning behind denying mentally disabled patients organ transplants--and apparently there is absolutely no common ground in the medical community either. According to the Washington Post, about 39 percent of programs across the country "rarely" factor intellectual disabilities into transplant decisions, while 43 percent "usually" take intellectual disabilities into account. No wonder advocates for the disabled have been banging their drums around this medical injustice for decades.

If it were not for the fierce bravery of Amelia's parents to fight for every second of her life, and Chrissy's powerful first person account that has generated an intense amount of interest around this debate, most folks would probably remain blissfully ignorant of the fact that some doctor's believe that they can deny children life-saving organ transplants based on their presumed quality of life.

Do you think hospitals or doctors should be able to deny organ transplant requests for mentally disabled children?


Image via ABC News

Topics: diseases  health care  latino health  mental health