Continued from page 2

Camosy said that while it’s true that there are shortages of kidneys and other organs, the criteria used to make transplant decisions “should not ever devalue those that are mentally disabled.”

“This is a growing movement that transcends liberal or conservative that says this kind of life, because it’s so vulnerable, it deserves special protection,” he said.

Whatever the 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 Medical Center whose research focuses on communication with non-vocal patients, 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 noted that it’s virtually impossible to have a full discussion 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 “really 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.

___

Begos reported from Pittsburgh.

___

Follow Matt Moore at http://www.twitter.com/mattmooreap

___

Story Continues →