“There’s a lot of camaraderie” between parents of special-needs kids, Stilwell said. “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.”
Messages seeking comment from the Riveras through Facebook and to their home were left Wednesday.
The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.
For example, the blog notes that Rivera told the hospital that “we plan on donating” the kidney, since they come from a large family.
“Most adults can’t donate an organ, because it won’t fit” a child, Caplan said. “You’re starting to say you’re going to use another child as a living donor, and that’s ethically really trouble.”
The supply of organs for child transplants is “extremely limited,” Caplan added.
“So you have hard choices to make,” he said. “Dialysis may be a better option.”
However, in recent years some hospitals have pioneered ways to use an adult’s kidney in a child.
According to the National Institutes of Health, 87,820 people were awaiting kidney transplants as of last February. The National Kidney Foundation, which seeks to enhance the lives of people affected by kidney disease, said 4,573 patients died in 2008 while waiting for kidney transplants.
A 2006 study from Ohio State University on kidney transplants for patients with mental disabilities found that the one- and three-year survival rates for 34 people were 100 percent and 90 percent, respectively.
“The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers,” the paper noted.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are “denied evaluation and referral for transplantation.”
Rivera’s blog noted that doctors said Amelia won’t need a transplant for six months to a year.
Some experts said that if Rivera’s claims are accurate, the hospital’s actions are very disturbing.
“Everyone deserves an equal chance to these organs, regardless of your mental capacity,” said Charles Camosy, a professor of Christian Ethics at Fordham University.