A mom who lives in Pennsylvania is fighting to convince doctors to put her son on the transplant list. He needs a new heart. The mother claims that the doctors are against the idea of doing the transplant because her son has autism, (and other issues).
Parents of kids who have special needs often find themselves doing a lot of parenting long after the child chronologically reaches the age they legally become an adult. Such is the case with Karen Corby, a mother from Pennsylvania, who is trying very hard to get doctors to give her son a heart transplant.
Her son, Paul, is 23. He has autism and a mood disorder. Sometimes, the mood disorder causes him to have outbursts. Around four years ago, Paul was diagnosed with left ventricular noncompaction. It is a deadly heart condition that requires a transplant. It is a congenital disorder.
Karen Corby claims that the doctors at the Hospital of the University of Pennsylvania have refused to put Paul on the transplant list because he has autism. She says that a doctor wrote to her and stated:
“I have recommended against the transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior”.
She has spoken with CBS Philly about the situation. She has also started a petition at Change.org to persuade the doctors to give her son the heart transplant that he requires.
On the other side of the story, the University of Pennsylvania Health System gave a statement to the Associated Press. The statement point out that they cannot discuss cases involving an individual patient. Doing so, I presume, would break confidentiality. Part of the statement says that the transplant center reviews all aspects of a patent’s medical status in their decision making process.
This reminds me a little of a situation from earlier this year where a girl named Amelia “Mia” Rivera required a kidney transplant. Originally, she was refused because she has Wolf-Hirschhorn syndrome. Mia’s mother said that the doctor told her Mia could not have a transplant because she was, “mentally retarded”.
Mia’s story got spread across the internet, and it resulted in an apology from the Children’s Hospital of Philadelphia, where Mia’s case for a transplant was being reviewed. Last I heard, the result was that the doctors agreed to consider putting Mia onto the transplant list. I’ve no idea what happened after that.
Image by Bill Ward on Flickr