A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.
Sunday, August 19, 2012
News Alert: Man with autism denied heart transplant by hospital
23-year-old Pennsylvania man with autism denied heart transplant by hospital
Paul Corby was born with a heart defect but is otherwise healthy and high functioning. People with autism are sometimes kept off transplant lists out of fear they will be unable to follow doctors instructions after the procedure.
Paul Corby, who is autistic, has been denied a heart transplant by Penn Medicine.
A Pennsylvania mom is fighting to get her 23-year-old autistic son the heart he needs to survive after doctors denied the transplant.
“I was numb at first,” Karen Corby told ABCNews.com, recalling the moment she learned her son’s name wouldn’t be added to the transplant list.
Paul Corby is able-bodied and high-functioning — his only trouble is his heart. Penn Medicine — a hospital group — denied him the operation “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior,” according to a letter from the hospital.
Paul was born with a damaged left ventrical, meaning his heart can’t pump the right amount of blood, a condition called left ventricular noncompaction. His family learned about the condition in 2008, and last year was told Paul would need a heart transplant.
Because there are fewer organs to go around than people who need them, doctors have to be careful when choosing transplant recipients. Healthy patients, and ones trusted to take care of the organ, are the best candidates.
Dr. Arthur Caplan, head of medical ethics at NYU’s Langone Medical Center, says there are several reasons why Paul might not have been chosen for the transplant list.
“Programs worry patients can’t comply with taking their medicines and doing what they have to do after the transplant,” Caplan told the Daily News. “Basically, a heart transplant is substituting a chronic illness for a terminal disease. You got a transplant, now you have to manage it. Some centers worry a person with autism can’t follow directions.”
Caplan notes that people with autism have received transplants in the past, and a person denied at one medical center might be accepted at another. Penn Medicine may also reverse the decision.
Corby says she has not been told how long her son has to live.
She has since launched a petition on Change.org, calling for the hospital to change its mind about the transplant.
Penn Medicine won’t comment on Paul’s specific case, but says several factors are considered before putting a patient on the transplant list.
“Our criteria for listing an individual for transplant are regularly reviewed in comparison with national standards, but we always encourage patients to seek another opinion,” a statement reads.
Caplan says Corbin’s efforts to push Penn Medicine can help, but ultimately, hospitals just need more organs.
“If we had more hearts and more people were organ donors, it would help these types of situations,” he said. “But at the end of the day ... hard choices get made.”