In brief, her son 23-year old son Paul is autistic and he is so unwell that he is in need of a heart transplant. The Corbys learned this in 2008, and Paul’s condition has been serious for the past four years. In 2011 they were told it was time for a heart transplant. That didn’t happen in 2011. The reason it did not happen has become the story. It may not happen at all unless Karen can succeed in her cause.
Having heard that another woman gained a successful outcome for her child by acquiring 50,000 signatures, Karen began this petition process to ask the U of Pennsylvania to put her son on the transplant list.
This story makes news because Paul has been turned down as a viable recipient precisely because of his autism. It’s the Hospital of the University of Pennsylvania that refuses to put Paul Corby on the transplant list -- because he's autistic. Well that is at least the way it sounds and the way in which she is presenting it. Karen has written, “My son has faced discrimination because of his autism all his life, but this time, that discrimination could kill him.”
His autism renders him a questionable candidate for transplant surgery because the demand for such a generous surgical procedure is so high and in the minds of those who did the assessment, Paul’s autism presents numerous potential complications. He cannot properly understand the procedure. He may become combative and uncooperative. He may compromise the surgical work. Recovery and convalescence may be jeopardized if he pulls out intravenous tubes and otherwise interferes with the outcome. The cardiologist at Penn Medicine told Corby that Paul was denied "given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."
His heart condition is called left ventricular noncompaction. Paul has a left ventricle that didn't close after he was born, so his heart doesn't pump the right amount of blood. Medical professionals have said he requires a new heart in order to survive.
Do you think that should make the news? I do. Well so have other journalists with a far wider audience. Good for them. But will it be enough? Paul's experience raises questions about how autism and other brain disorders should be factored into transplant decisions.
Paul is diagnosed with Pervasive Developmental Disorder Not Otherwise Specified - is high functioning and spends his days playing video games and writing the sequel to his pre-teen, self-published novel, Isaac the Runner. He carried his ever-present Princess Peach doll with him to his transplant evaluation. He takes medicine for an unspecified mood disorder, his mother said. He has shouted loudly enough that police have been called "three or four times" to the family's home.
Does he deserve to be placed on the waiting list for heart transplant procedures? Do you know anything more about this story? Do you have anything to say?
Medical debate: Should autism block a man from getting a heart transplant?