Last week, a doctor in Philadelphia told the parents of three-year-old Amelia Rivera that she was not eligible for a kidney transplant solely because she was mentally disabled, and therefore, her life was not worth saving.
Chrissy Rivera, Amelia’s mother, posted a blog entry describing her meeting with this doctor at The Children’s Hospital of Philadelphia (CHOP). According to her blog, she and her husband, Joe Rivera, were at the hospital to discuss treatment for Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic condition that can cause a number of birth defects, including mental disabilities. When the doctor told them Amelia could not have the transplant due to her mental condition, Rivera was appalled:
“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?’ … 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.”
According to the Associated Press article that reported on the story, Sunday Stilwell, a mother with two austistic boys, saw the story and began an online petition requesting that the hospital allow the transplant for Amelia. Over 32,000 people have currently signed it.
Contrary to what the doctor told Amelia’s parents, CHOP has said it “does not disqualify potential transplant candidates on the basis of intellectual abilities.” It added “We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities,” and noted that it is “deeply committed” to providing the best medical care for all children, regardless of disabilities.
Experts have told the Associated Press that the issue probably depends more on complications such as availability of organs, rather than Amelia’s disability. According to another AP article, Amelia’s parents are saying their complaint may be with just the doctor, not the hospital. “It’s one doctor who’s never seen us who is making this call,” Joe Rivera said. “We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”
Whether it’s just one doctor or the whole hospital, medical discrimination against the disabled is becoming an alarming pattern. The LifeNews article reporting on this story points out two recent examples: Baby Joseph Maraachli, whose parents battled to get him a tracheotomy denied by a Canadian hospital due to “quality of life concerns,” and Baby RB in Britain, whose father fought a hospital’s refusal of life-saving treatment for his son.
Stilwell, who has been in daily contact with the Riveras over the events, told the AP, “There’s been a lot of camaraderie” between the parents of disabled children. “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 did it. I couldn’t actually believe this was happening.”
Rivera’s blog highlights the battle between the families with disabled children and those who think they have the authority to decide who should live or die based on their own ideas of “quality:”
“Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next.”
If you would like to help Amelia get her transplant, sign the petition here.