Mom seeks heart transplant for autistic son
PHILADELPHIA (AP) - A Pennsylvania woman whose autistic adult son was not recommended for a heart transplant said she wants to bring more attention to the decision-making process so that those with ailments or disabilities are not passed over without careful consideration.
Karen Corby said Thursday that her son, Paul, now 23, was denied a heart transplant from the Hospital of the University of Pennsylvania last summer over what it said were concerns about his "psychiatric issues" and "autism," among other factors.
One expert on medical ethics said it's legitimate for the mother to raise the point, but there's an even bigger one, too.
"The thing to keep in mind is if more of us would sign donor cards, there would be less pressure to reject anybody. It's the huge shortage of hearts that really drives this problem," said Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center.
Paul Corby was recommended for the procedure because he was born with left ventricular noncompaction, a congenital disorder that left part of his heart less able to pump blood through his body. He was diagnosed with the ailment in 2008. He was referred to Penn Medicine in 2011 to discuss a transplant.
In a letter, dated June 13, 2011, Dr. Susan Brozena wrote: "I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."
His mother said she was taken aback by the decision and noted that her son, who is diagnosed with Pervasive Developmental Disorder, was upset by the decision, but optimistic that a transplant could come.
"He just needs a fighting chance and the same rights to medical care as others his age," she said in a statement. "Autism is not a terminal disease and we cannot allow it to become one."
Mindful of a similar incident in Philadelphia where a New Jersey family's daughter was denied a kidney transplant because of mental disabilities - a decision that went viral online - Corby began her own online petition.
"There has been a huge outpouring of support from Autism groups all over the country," she said in an email to The Associated Press, noting that the number of signers has jumped from 1,500 in April to just more than 13,000 on Thursday. "I would not have found the strength to continue fighting had it not been for them."
In a statement, the University of Pennsylvania Health System said it cannot discuss its' patients' cases but noted that "when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed."
"This includes the current health status and post-transplant prognosis of the recipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient's existing drug therapies and the drugs that would be necessary to stop transplant rejection," read the statement from spokeswoman Susan Phillips.
"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."
Caplan said it's appropriate to have a public discussion about the issue, since organs are donated by the general public. But he also said that autism is something that any institution would "absolutely" take into account in deciding eligibility.
"It's not like autism is not relevant," he said, since the term covers a very broad range of symptoms, including some people who have difficulty taking care of themselves.
"You need to be able to complain if you get certain symptoms," he said of a transplant patient, adding that a heart transplant isn't a simple cure, but rather a case of trading a terminal disease for a chronic one that needs long-term monitoring and medication.
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Begos reported from Pittsburgh.
Karen Corby said Thursday that her son, Paul, now 23, was denied a heart transplant from the Hospital of the University of Pennsylvania last summer over what it said were concerns about his "psychiatric issues" and "autism," among other factors.
One expert on medical ethics said it's legitimate for the mother to raise the point, but there's an even bigger one, too.
"The thing to keep in mind is if more of us would sign donor cards, there would be less pressure to reject anybody. It's the huge shortage of hearts that really drives this problem," said Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center.
Paul Corby was recommended for the procedure because he was born with left ventricular noncompaction, a congenital disorder that left part of his heart less able to pump blood through his body. He was diagnosed with the ailment in 2008. He was referred to Penn Medicine in 2011 to discuss a transplant.
In a letter, dated June 13, 2011, Dr. Susan Brozena wrote: "I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."
His mother said she was taken aback by the decision and noted that her son, who is diagnosed with Pervasive Developmental Disorder, was upset by the decision, but optimistic that a transplant could come.
"He just needs a fighting chance and the same rights to medical care as others his age," she said in a statement. "Autism is not a terminal disease and we cannot allow it to become one."
Mindful of a similar incident in Philadelphia where a New Jersey family's daughter was denied a kidney transplant because of mental disabilities - a decision that went viral online - Corby began her own online petition.
"There has been a huge outpouring of support from Autism groups all over the country," she said in an email to The Associated Press, noting that the number of signers has jumped from 1,500 in April to just more than 13,000 on Thursday. "I would not have found the strength to continue fighting had it not been for them."
In a statement, the University of Pennsylvania Health System said it cannot discuss its' patients' cases but noted that "when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed."
"This includes the current health status and post-transplant prognosis of the recipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient's existing drug therapies and the drugs that would be necessary to stop transplant rejection," read the statement from spokeswoman Susan Phillips.
"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."
Caplan said it's appropriate to have a public discussion about the issue, since organs are donated by the general public. But he also said that autism is something that any institution would "absolutely" take into account in deciding eligibility.
"It's not like autism is not relevant," he said, since the term covers a very broad range of symptoms, including some people who have difficulty taking care of themselves.
"You need to be able to complain if you get certain symptoms," he said of a transplant patient, adding that a heart transplant isn't a simple cure, but rather a case of trading a terminal disease for a chronic one that needs long-term monitoring and medication.
___
Begos reported from Pittsburgh.
YOU PEOPLE ARE MIS INFORMED... EVERY LIFE HAS VALUE...read your bible. He shouldnt have a shortened life based upon something out of his control. we all deserve a chance to live. smh this is why america is messed up look at the folks out here who think he shouldnt. shame on ALL of you
I read the disparaging remarks here, the "well, it's for the better good" comments, and I am led to wonder:
How many of these nay-sayers were in the chorus prattling about the "death panels" when the Obama Health Care Reform was being created?Â
It seems they are their own self-fulfilling misery...
Short summary of this article:Â "I'm sorry but we at the Hospital of the University of Pennsylvania won't save your life because we deem that you aren't worth it. Go away."
Â
These excuses would apply to anyone in varying degrees. If he's next on the list then they should re-examine their so called "ethics" and just do it. He's a person. Go play Logan's Run on your own time.
@A Believer I hope this mother starts publishing the names of the dr(s) who refused to put him on the transplant list, maybe some good old embaressment would make them re-think this. If enough of us make a fuss things will change. I am currently an organ donor and I don't agree that they can decide not to help someone who has a disability due to no fault of thier own.Â
 @momof2:Â
It's not Dr. Jones or Dr. Smith or Dr. Harris who makes the final decision. There are specific criteria that are applied when the cases are being considered to be lidsted on the transplant list - these are the same nationwide. It is applying the known standards of care to each case to try to predict the optimal outcome. If there were more donors, there would be more organs available - THAT is what this mother should be wporking towards, getting more people to become organ donors.
@MomOf2 It might not have been doctors but a governing board (which may or may not consist of doctors) in the hospital.
I understand the mother's concern, but the doctors are also taking into account how well the son will follow care instructions and take the proper medication, communicate with doctors if there is a problem, etc. And since he is already on medication for his psychiatric issues, getting lots of anti-rejection steroid drugs could cause all sorts of psychiatric problems. The mom will only be around so long to help him. My dad was given steroids after a surgery and he was a monster on them, to the point that the nurses had to sedate him and give him sleeping pills to keep him calm. The doctors have to choose from long lists of donors, and they want to make sure they pick someone who is likely to succeed and thrive. They wouldn't want to do a transplant on someone who does not want to follow instructions, doesn't understand instructions, and will have a high chance of major problems. It's sad, but why risk it when you know that there are many more people who need a heart who are capable of understanding and thriving.
@Sandygal1976 So the other people are worth more because they don't have a disability that isn't thier fault? Bullshit! This young man deserves the chance. How will they ever know if they don't try?Â
 @momof2:Â
I think the point made in the story is the one worth persuing - there are simply not enough donor organs of any sort available. We have well publicized donor drives for bone marrow when a person of a particular ethnic background is in need of a donor, why not well publicized drives to sign up organ donors?
 @MomOf2  @Sandygal1976Â
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"So the other people are worth more because they don't have a disability that isn't thier fault?"
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Yes, they most certainly are. It is ludicrous waste to put a perfectly good organ into the body of someone unable to care for it.
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He might deserve the chance, but he doesn't get one. Those are not the cards he has been dealt. And my conscience is sound knowing that someone who can actually care for the transplanted organ will get it instead of him.Â
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I am sorry, but the answer here has to be no,,,,,,,it's sad, but it's the right answer,,,
@Smoker
@Smoker Why? Is he not good enough because he has something he has no control of? My aunt had a heart transplant after years and years of drug use- the dr had to keep her in the hospital so she would stay off the drugs long enough to be eligable for the transplant, 6 months later she was using again and had even told her dr she wouldn't stop using if she got a new heart. This young man has done nothing wrong- he desereves a new heart as much as the next person. Autism is NOT a death sentence- it is something you learn to live with.
 @momof2:Â
I think in your aunt's case they made a horrendously bad decision - they should have let her self-destruct & put the heart into someone who would actually take care of themselves & the donor organ.
Â
Yes, in a "perfect world", all lives would have equal weight, all lives would be equally deserving of a donor organ being transplanted to save a life. But we live in an imperfect world. ALL factors have to be weighed & measured to give the donor organs to those who have the best chance to survive with them, based on what is known to date.
I understand completely how this mother feels. My brother needs a heart transplant as well. In April of this year he was finally listed after a year of doing what Oregon Health Sciences University asked of him. One month later he was diagnosed with ALS, otherwise known as Lou Gerhigs Disease. A slow progressive form, he was told he could live 10-20 years. However, without the transplant he may not live another year.
The doctors at OHSU are afraid of how his ALS meds will be affected by the anti rejection meds. I thought they where a learning hospital, so learn!! How will they ever know if they don't try!!
 @draco:Â
They are not a "learning" hospital, they are a "teaching hospital. And as such, do you really want your brother to be a guinea pig in an experiement that may fail & ultimately cost him his life? Think carefully as they say, be careful what you wish for, as it just might come true. A trans[plant is irreverseable it's not like they can take it out if it turns out the meds are incompatible. Has your brother talked with them about mechanical hearts? Since that is a "add on" (so to speak) rather than a "replacement", that might be a route to persue.
@Draco That effing sucks. Keep pushing them to help your brother, don't stop!