An autistic 23-year-old man, Paul Corby, has been denied a heart transplant by the hospital at the University of Pennsylvania. In 2008, Corby’s family learned that he has a left ventricle that did not close after he was born, so that his heart does not pump the right amount of blood. A cardiologist said he would need a transplant in 2011.
Paul’s mother, Karen Corby, received a letter in June 2011 from Penn cardiologist Susan Brozena recommending that he not receive the transplant “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Paul’s official diagnosis is Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). As his mother tells the Philadelphia Inquirer:
… [Paul] 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.
Paul currently takes 19 medications, most for his heart condition, and has anxiety; though he has not been diagnosed with a specific mood disorder, he takes a mood stabilizer. Following the Penn hospital’s rejection of his transplant request, Paul has been “more depressed and upset,” says the Philadelphia Inquirer. He also notes that he feels “desperate” for treatment and that neither surgery nor long, and potentially repeated, stays in the hospital scare him: “I don’t care how long I’m in there. I just want my life to be saved. That’s all,” he says.
Debate About Medical Ethics
Paul’s case has sparked a debate about medical ethics. Dr. Daniel Coury, Autism Speaks’ Medical Director for the Autism Treatment Network, tells ABC News that “It seems that they have looked at this person as a label rather than the unique qualities that this person has.”
Dr. David Cronin, an associate professor of transplant surgery at the Medical College of Wisconsin, emphasizes that, while not knowing all the specifics of the case:
“I have never since 1995 seen that decision made in a cavalier fashion. These decisions are not made in isolation. They’re not made easily … We know the outcome is if someone is denied a transplant.”
Decisions about organ transplants are “one of the few areas of modern medicine with overt and unavoidable rationing,” says the Philadelphia Inquirer. 331 people waiting for heart transplants died last year; ABC News says that “denials come because organs are a scarce resource, with three to four times as many people who need transplants as there are organs available.”
Penn health system spokeswoman Susan Phillips notes that 38 percent of patients who had been evaluated for heart transplants during the last two years had been denied, “mostly because of other medical conditions that would affect their survival or quality of life after a transplant.”
Medical Care For Individuals With Disabilities
I first read about Paul Corby being denied a heart transplant in a post last week on Babble.com by Joslyn Gray, who has two sons with Asperger’s Syndrome. My teenage son Charlie is on the moderate to severe end of the autism spectrum. After he banged his face through a car window, an ER doctor refused to give Charlie stitches on the front of his face, on the grounds that he would rip the stitches out. We were appalled to hear this.
On another occasion, Charlie needed staples in the back of his head and pulled them out (fortunately, after his wound had healed sufficiently).
A huge outcry was raised earlier this year when the Children’s Hospital of Philadelphia (CHOP) denied a kidney transplant to a 2-year-old Amelia, who has Wolf-Hirschorn Syndrome (a genetic condition occurring in 1 in 50,000 individuals), a kidney transplant. With more and awareness for individuals with disabilities, the ethical issues raised in Amelia’s and Paul’s cases are sure to arise again.
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Photo by Alex E. Proimos