The 3-year-old girl who sparked a national debate over whether "mental retardation" should be grounds for denying a patient an organ transplant, will receive a new kidney.
Amelia Rivera was initially denied the transplant by Children’s Hospital of Philadelphia because the same genetic disorder that caused her kidneys to fail also left her severely cognitively impaired, and unable to walk or talk. While she would die without a transplant, doctors originally said, a cascade of other health problems might well shorten her life even with one. The decision was made to not place her on the organ recipient list.
Her parents argued that this was tantamount to discrimination based on her mental capabilities. They never asked that Amelia receive an organ from a stranger but did not understand why she could not receive one from a relative, known as a designated donation. After they took their plea to the internet, and more than 50,000 signed a Change.org petition and joined #TeamAmelia on Twitter, the hospital agreed that family and friends could be tested to find a match.
On the website of WolfHirschorn.org -- the support group for the syndrome that Amelia has -- her mother, Chrissy, announced yesterday that she would be her daughter’s donor.
“Our family received word about a month ago that Amelia is officially approved for the kidney transplant,” Chrissy wrote. “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.”
A reversal of the hospital’s decision is not the only result of the family’s fight. As Babble reported earlier today:
In the wake of the immense outcry over Amelia’s story, legislation was passed in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability. The Children’s Hospital of Philadelphia, while based in Pennsylvania, has primary care and specialty care offices in several New Jersey locations. It also has affiliations with hospitals in Princeton and Somers Point, N.J.
And Chrissy said she is personally transformed by the ordeal. She is a private person, she said, and it was hard to publish the original post, called “Brick Walls” that put her daughter in the spotlight. Yesterday, she wrote that she had “absolutely no regrets” about going so very public, in spite of “the chaos that ensued,” particularly the often-harsh and “negative comments people would make about my daughter and the special needs community.”
It was worth it, she wrote, because:
It has opened many people’s eyes to just one more injustice that the special needs community endures because someone in authority does not believe a life that Is different from their own is worth living. I stand by what I wrote and heard loud and clear what was being presented to me that day. Brick by brick, I hope we can all work together to take down the walls society places around our children.