Autism Shouldn’t Prevent a Man From Getting a Heart Transplant

How to determine quality of life in seriously ill, developmentally disabled patients.

Earlier this week, the Inquirer ran the provacatively titled, “Should autism prevent a man from getting a heart transplant?,” a lengthy piece detailing one family’s medical controversy. Paul Corby is a 23-year-old local man who needs a heart transplant due to left ventricular noncompaction. He is also diagnosed as having Pervasive Developmental Disorder Not Otherwise Specified, one of the conditions on the autism spectrum, which is an umbrella term for a broad a range of developmental conditions. Additionally, Corby has an unspecified mood disorder. The Hospital of the University of Pennsylvania has refused to perform the surgery.  Corby’s mother, Karen, is flummoxed about why autism would prevent her son from having the surgery and is admirably trying to rally support. 

I imagine she’s also pretty angry, which is how I initially felt when I read the piece. I thought of my energetic nephew Sean, who is six years old and has both acute lymphoblastic leukemia and autism. If someone told my family that Sean could no longer receive chemo—a life-saving treatment—because he also happens to be autistic, I would probably lose my mind with rage.

Of course, chemotherapy and heart transplants are not quite the same. While some of Sean’s chemo drugs are in shorter supply than ever, they are far more readily available than a beating heart. Across America last year, more than 300 patients died waiting for heart transplants.

Many are comparing Corby’s case to the recent Amelia Rivera controversy at Children’s Hospital of Philadelphia. Rivera is a mentally retarded three-year-old who was denied a transplant by CHOP for quality of life reasons. After a huge public outcry, Rivera eventually was allowed to have her surgery; her mother was the organ donor. While there are certainly arguments against the cases’ similarities, the thread tying her story to Corby and to my nephew Sean is easy to see: they’re all developmentally disabled individuals who also have very serious physical medical ailments.

How does a medical team determine that one individual’s life is worth saving more than another’s? Does autism—or any other developmental disability—automatically disqualify one from having a fulfilling life? Considering that about 1 in 88 children have been identified as having an autism spectrum disorder, it seems that we’d be discounting the worth of an awful lot of lives. Corby is a high-functioning autistic person. Many high-functioning autistic men and women can do so-called normal things like go to college, drive cars and work as productive members of society.

Are their lives not likely to be saved because the odds are that they won’t become rocket scientists or engineers or doctors? (Better not tell that to Temple Grandin, who is an acclaimed doctor of animal science and perhaps the most famous autistic person alive.) Does the life of an autistic person matter more than the life of a mentally retarded one? When is mental health an issue? Is a bipolar person a lesser candidate for a life-saving procedure than an anxious one?

Despite the Inky’s headline, this isn’t a debate about autism and transplants. It’s likely that autism isn’t preventing Corby’s operation. According to a statement from HUP, Corby’s doctor recommended against his transplant “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

Rather, the issue is about quality of life. It’s a vicious spiral and the question inevitably becomes: Where do we draw the line? Doctors have the unenviable task of determining what combination of issues moves a person from being a viable candidate to being denied the medical help they need to survive.

Corby’s mother—like Amelia Rivera’s mother—created an online petition to gather support for her son’s surgery. Thousands of people have signed their support. If the Corbys are successful, public opinion will shame HUP into reversing their decision and Corby will get a new heart. And with any luck, that will be the correct decision for his quality of life.