A Pennsylvania woman is fighting for her 23 year-old autistic son who was denied a heart transplant because of his disability.
Paul Corby - Photo by AP
The Associated Press (AP) is reporting that Karen Corby has started an on-line petition on behalf of her son, Paul, who was turned away for a heart transplant by the Hospital of the University of Pennsylvania (HUP) because of his “psychiatric issues” and his “autism,” among other factors.
Her son, suffers from Pervasive Developmental Disorder, was also born with a congenital disorder that left part of his heart less able to pump blood through his body, and was referred to HUP last year for a transplant.
However, after reviewing the case, Dr. Susan Brozena informed the family that she was not recommending Paul for a transplant because of “his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Corby says she was stunned by the decision and believes her son has the right to the same medical care as anyone else.
“He just needs a fighting chance and the same rights to medical care as others his age,” she said in a statement. “Autism is not a terminal disease and we cannot allow it to become one.”
She started on-line petition in protest of the decision that has acquired 13,000 signatures from what she described to the AP as a “huge outpouring of support” from autism groups across the country.
“I would not have found the strength to continue fighting had it not been for them,” she said.
Meanwhile, HUP is standing behind its decision. In a statement from spokeswoman Susan Phillips, the University of Pennsylvania Health System said it cannot discuss its’ patients’ cases but noted that “when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed.”
She added: “This includes the current health status and post-transplant prognosis of the recipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient’s existing drug therapies and the drugs that would be necessary to stop transplant rejection.”
Medical ethicist Arthur Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center said the problem is a lack of donors. “The thing to keep in mind is if more of us would sign donor cards, there would be less pressure to reject anybody. It’s the huge shortage of hearts that really drives this problem,” he told the AP.
However, he said the fact that Paul has autism is something that any institution would take into account before determining eligibility.
“It’s not like autism is not relevant,” he said, noting that degrees of autism vary and some are not able to take care of themselves. “You need to be able to complain if you get certain symptoms.”
Corby is determined to fight, however. As she states in her online petition, “the doctor was more interested in the fact that he could not name all his medications (he takes 19 at the present time) and the Princess Peach doll he carries for comfort, than the fact that he has never smoked or drank alcohol. Where will the discrimination end?”
Click here to sign the petition.
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As a registered nurse who has cared for patients requiring a heart transplant and those who have received heart and lung transplants, I would have to agree with the doctors and medical ethicist. The work up prior to transplant is intensive and care after the transplant is complicated. It is intimidating even for those in the best of circumstances. Given the shortage of donor hearts, many factors go in to patient selection including pre-existing conditions and the ability to comply with a complicated drug regimen post transplant. I can understand the mother’s concern in wanting the best for her son, but we tend to look at these circumstances in the best possible light and not in terms of what would happen if things did not go well and he had complications after the surgery. I pray that she will accept this cross and enjoy her son for as long as she has him.
I can never accept this cross. The committee has no idea what my son is capable of. They did no tests except to check his blood pressure. They have no idea of his cognitive ability and his high intelligence. They saw autism and that was the end of discussion. I will never, ever stop fighting for him.