Three-year-old Amelia Rivera suffers from a rare genetic disorder called Wolf-Hirschhorn syndrome, and she needs a kidney transplant to survive.
But her mother, Chrissy, says a doctor at the Children's Hospital of Philadelphia (CHOP) refused to give her daughter the operation because Amelia was "mentally retarded."
Doctors have to weigh factors, such as life expectancy and health conditions, before placing anyone on organ waiting lists. But Rivera and her husband told NBC Philadelphia that they planned to find a donor for Amelia on their own and weren't requesting she be added to the waiting list.
However, according to Rivera, the doctor allegedly said he still would not perform the operation, even if the couple found their own donor.
Rivera took to a Wolf-Hirschhorn blog to write about the experience, a story that has sparked conversation among supporters and critics who've taken to blogs and social media to debate the hospital's controversial decision.
In her blog post, Rivera expressed outrage at the doctor's response to her concerns, writing:
So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!
CHOP soon released a statement on its Facebook page addressing the Riveras' story. It reads:
We hear you.
We feel and understand your frustration, but we are unable to comment publicly on individual cases...
The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.
HuffPost columnist and writer Lisa Belkin spoke with pediatrician and geneticist Dr. Kurt Hirschhorn, who was among the first to identify Wolf-Hirschhorn Syndrome in the 1960s.
Hirschhorn said that while the hospital was right not to place Amelia on a waiting list, he didn't see anything wrong with letting Amelia use a "living designated donor" who would understand that "Amelia's life would be prolonged, but not saved, by the transplant."
But author and Huffpost blogger Susan Senator, who has a son with autism, is less forgiving of the doctor's decision not to allow Amelia on the transplant waiting list. She writes:
Yes, that is the reality: to think of the greater good. And yet, it also feels a bit like Social Darwinism, or even eugenics. Why does a team of doctors get to decide that Amelia is less deserving than someone else? Are doctors always right? History is full of mistakes in the medical profession.
Amelia's story has prompted an outpouring of support, with parents organizing petitions to urge the hospital to allow the transplant, according to USA Today.
The petition had garnered just over 21,000 signatures as of Jan. 17.
On Monday, Rivera said the hospital contacted the family to talk about the operation, according to CBS Philadelphia.
For more on the story, watch the video report by NBC Philadelphia included below.