Girl denied a transplant due to “mental retardation” to receive new kidney

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Following a national outcry and a petition signed by more than 50,000 people, the mother of Amelia Rivera announced August 6 that her daughter will receive a new kidney.

“Our family received word about a month ago that Amelia is officially approved for the kidney transplant,” Chrissy Rivera wrote on wolfhirschhorn.org, where she has documented her daughter’s story. “All of her specialists, and some we have only just met, agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about ten percent. She is at about 14% right now. Amelia was at 15% last December when we first heard the news that she would need a kidney transplant.”

In January 2012, Children’s Hospital of Philadelphia denied Riviera, a three-year-old girl with Wolf-Hirschhorn syndrome, a transplant, stating that she was “mentally retarded” as among its reasons. The mother stated that they never asked Rivera be donated an organ from a stranger, only from a relative, in what is known as a designated donation, according to a Huffington Post article. The mother later agreed to donate her kidney.

The case provided a rare window into the unique challenges medical specialists face when approving patients for organ transplants. The decisions often involve inherently subjective quality-of-life considerations that leave people with disabilities nowhere to turn.

In another widely publicized incident, the Hospital at the University of Pennsylvania denied a hear transplant to Paul Corby, a 23-year-old with Pervasive Development Disorder, in June 2011, according to a Philadelphia Inquirer article. In its rejection letter, the hospital highlighted his “psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on his behavior.”

More than 200,000 people have signed his petition as of August 19.