Bioethicist discusses why hospitals may deny transplants for intellectually disabled

Three-year-old Amelia Rivera has a rare genetic disease called Wolf-Hirschhorn Syndrome.

She suffers from mental impairment, epileptic-like seizures, and she can’t walk or talk. She’s also in desperate need of a kidney transplant if she wants to survive to her fourth birthday. The Children’s Hospital of Philadelphia, where Amelia has been treated since she was born, told Amelia’s family they would not perform a transplant for Amelia, even if a family member donated the kidney.

Her mother, Chrissy Rivera, wrote a detailed blog about her experience at the hospital and said she was told the hospital would not perform the transplant because Amelia is “mentally retarded.”

“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, recalling her actions in the meeting at the hospital.

In the wake of intense outrage and protests, the hospital has invited the Rivera’s back in for another meeting and further discussion. More than 28,000 people have signed a petition on change.org, demanding Amelia get her transplant.

In a statement, the Children’s Hospital of Philadelphia, said it does not disqualify potential transplant candidates strictly on the basis  of intellectual abilities, but, citing privacy concerns and federal regulations, declined to discuss this case specifically.

Dr. Art Caplan, a professor of bioethics at the University of Pennsylvania, said doctors have to consider physical complications that make transplants more difficult. Caplan wouldn’t discuss this case in particular, because Penn and the hospital are affiliated, but he agreed to talk generally about the factos that go into making transplant decisions.

For example, people with Wolf-Hirschhorn are smaller, have seizures and can have malformed organs, which are complications doctors need to consider, he said. Those problems, along with the intellectual disabilities, can lead a transplant surgeon to question whether an individual is a good candidate for a transplant.

“Meaning, if your other organs are malformed, you may not live very long even if you get the kidney, if your heart doesn’t work right or your liver doesn’t work right,” Caplan said. “Remember, you have to take all kinds of drugs after the transplant and if she has seizures and gets immunosuppression to make the kidney transplant work, oddly enough that can exacerbate the seizures.”

All of those factors need to be considered when choosing whether to perform a transplant, and that’s even before considering that you can’t just stuff an adult-sized kidney into a small child.

The other factor, according to Caplan, is that people with mental impairments often end up institutionalized. Those places can often be sources of infection, which is just exacerbated in people who have received transplants.

“A child who has a lot of cognitive impairment can’t tell you what’s going on,” he said. “You have to watch carefully. Loving parents say ‘yeah, I’ll do that, and no problem, we’ll do whatever it takes.’ But for other kids, who have cognitive impairment, they may not have the same social situation. So, mental impairment could be taken into account because it really complicates follow-up care.”

Boiled down, Caplan said there are reasons why mental impairment and associated problems can and should be taken into account when determining if someone should be given a transplant.

“If you’re just saying to someone we’re not going to transplant you because you’re mentally impaired, I think that’s wrong,” Caplan said. “If you have connections from the impairment to the chance that the transplant will work, then you’re starting to get something that makes more ethical sense.”

The other complicating factor is that even if parents or family members are ready and willing to give up their own organ for the sick kid, there are questions of risk for the donor that doctors have to consider.

“There’s an ethic that says do no harm ont he part of the transplant team, so they’re not going to do just whatever the parent says,” Caplan said. “They won’t sacrifice or put at high risk someone to save another.”