(Photo courtesy of the Corby family.)
He has a rare, congenital heart condition called Left Ventricular Noncompaction (LVN).
Paul's father died of a stroke at age 27 due to undiagnosed LVN. Paul has already had three mini-strokes. His heart ejection fraction (the ratio of blood pumped through his heart) is only 20 percent.
Paul's cardiologist referred him to Penn Medicine at Radnor, part of the Hospital of the University of Pennsylvania.
The transplant center at Penn Medicine decided not to put Paul on the heart transplant list, in large part because he is autistic.
Yes, you read that right.
Paul Corby was denied placement on the heart transplant list because he's autistic.
Paul's mother, Karen Corby, has been trying to get media attention for over a year. By chance, one of my blog readers forwarded her change.org petition to me.
Paul's case echoes that of Amelia Rivera, a a four-year-old girl with Wolf-Hirschhorn Syndrome, who was initially denied a kidney transplant by the Children's Hospital of Philadelphia (CHOP) because (and I'm quoting from the hospital's documentation here) she is "mentally retarded." I'm taking it as a good omen that today I got the good news that Amelia will be getting her kidney after all. (With Transplant Approved by Hospital, Amelia Rivera's Mom to Donate Kidney)
Amelia's situation turned around after blog posts, social media, mainstream news outlets, and a change.org petition created a PR nightmare for CHOP. That change.org petition was started by my pal Sunday from Adventures in Extreme Parenthood, by the way.
CHOP, a hospital I hold close to my heart for saving Little Dude's life, has since apologized to the Rivera family for how it handled Amelia's case, and has changed its policies. Legislation was passed in Amelia's home state in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability.
Now, I'm not a doctor, and I don't even play one on TV, but it strikes me as both unethical and discriminatory to use autism as an exclusionary factor in deciding who gets an organ transplant.
Paul's story needs to be shared like Amelia's was. This needs to be addressed, and on a national level. As our kids get older, they are going to need healthcare and medical treatments that have nothing to do with autism. People age. They get diseases and disorders. Things fall apart. Sometimes, people need new organs.
Will your child be able to get an organ transplant if he or she needs one? Will mine?
I interviewed both Paul and Karen Corby, as well as leading national bioethicists, for my post on Strollerderby. The Corbys gave me permission to share the actual letter from the transplant facility that lists autism as a factor in deciding not to give Paul a transplant.
As hard as it is for us, as parents, to see things like that in black and white, please take the time to read and share the full article, Family: Young Man Denied Heart Transplant Because He's Autistic.
Please take the time to sign and share Karen Corby's petition on change.org, Help My Autistic Son Get a Life-Saving Heart Transplant.
As a human being, I'm appalled. As the mother of two kids on the spectrum, I'm terrified.