Parents of disabled girl denied transplant blame doctor, not hospital

Amelia Rivera, 3, reportedly was denied a kidney transplant because of a mental disability. Rivera was born with the genetic disease, Wolf-Hirschhorn syndrome.
CBS Philadelphia
amelia rivera, kidney transplant, Wolf-Hirschhorn syndrome
CBS Philadelphia

(CBS/AP) Did the Children's Hospital of Philadelphia deny a kidney transplant to 3-year-old Amelia Rivera because she has intellectual disabilities?

The New Jersey girl's parents now say their problems might lie with one doctor, rather than the entire CHOP hospital.

"It's one doctor who's never seen us who is making this call," Joe Rivera told The Associated Press on Wednesday. "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."

Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation might be more complex than people realize.

Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at the hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic disease that may cause physical and mental disabilities. Amelia will need a kidney transplant in six months to a year.

Chrissy Rivera, a 36-year-old high school English teacher, wrote that an unnamed doctor told her and her husband that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.

"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?"' she wrote. "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."

Joe Rivera said he was left thunderstruck. "It just felt like that you were punched in the gut," he told the AP. "It was mind blowing."

Rivera's story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she began an online petition Friday, demanding that the hospital give a transplant to the girl. By Thursday afternoon, nearly 32,000 people had signed it.

"I read Chrissy's original blog post, and I just cried. I couldn't believe it," said Stilwell, whose boys are 6 and 9. "I shared it on Twitter with all my followers and on Facebook."

Children's Hospital said in a statement that it "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," it said, adding that it is "deeply committed" to providing the best possible medical care for all children, including those with disabilities.

The hospital also acknowledged the public debate on its Facebook page. "We're listening. We hear your concerns and take seriously your posts, emails and phone calls," it wrote, adding, "Please know that you have been heard and that your feedback is appreciated."

Stilwell has been in contact with the Riveras daily over the events.

"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."

Dr. Arthur Caplan, director of the University of Pennsylvania Center for Bioethics, said the issue the Riveras face is not so simple.

For example, Chrissy Rivera wrote in the blog that she told the hospital that "we plan on donating" the kidney because 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."

However, in recent years some hospitals have pioneered ways to use an adult's kidney in a child.

There are 87,820 people awaiting kidney transplants in the U.S. 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 Ohio State University study 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."

Regardless of the specific medical details of Amelia's situation, her mother's blog captured the anger of parents with disabled children who don't want outsiders to decide life and death issues.

"Do not talk about her quality of life," Rivera wrote of her exchange with the doctor last week. "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."

Mary Beth Happ, a professor at the University of Pittsburgh Center for Bioethics and Health Law, said that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.

"Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an email.

But Happ and Caplan said it's almost impossible to know all the details of Amelia's case because of medical privacy laws.

"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is problematic.

Caplan said he has heard of cases in which other transplant programs considered severe mental disability as a factor in transplants.

"With scarcity, social factors do count, with every transplant," he said.