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“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.



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