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Claim: Heart Transplant Denied Due To Man’s Autism

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Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems — he has a form of autism — are severe enough to make him a bad candidate for a heart transplant.

Paul Corby

Paul Corby, 23, of Pottsville, Penn., front left, and his mother Karen Corby, front right, posing with members of Paul’s extended family, was evaluated for a heart transplant at the Hospital of the University of Pennsylvania and turned down because of psychiatric issues and autism.(Stacey Burling/Philadelphia Inquirer/MCT)

Doctors at the Hospital of the University of Pennsylvania have said they are, according to Paul’s mother, Karen. She disagrees and is using an online petition and the support of a network of autism advocates to make her case. Karen Corby says she was “stunned” by Penn’s decision, then inspired by another family’s successful fight with Children’s Hospital of Philadelphia over a similar decision.

“I guess they thought we would accept it and just wait for the inevitable,” said Corby, of Pottsville, Penn. She said she has not been told how long her son, who has a heart condition called left ventricular noncompaction, might live without a transplant.

Paul Corby initially took the decision well, but has since grown so depressed that his mother worries about how he’d react to another rejection.

“At first he was OK with it because he thought, ‘At least I don’t have to go through that surgery,’” his mother said, “and then he thought, ‘Why not? Why don’t they like me?’ “

Paul Corby’s situation is a window into the complex decisions that patients and doctors face when vital organs begin to fail. Organ transplantation is one of the few areas of modern medicine with overt and unavoidable rationing. There simply are not enough donated organs to go around, so doctors must make life-and-death choices. Nationally, 331 people died while waiting for heart transplants last year.

Karen Corby released a letter she received from Penn cardiologist Susan Brozena in June 2011. In it, Brozena said that she recommended against Paul Corby’s getting a transplant “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

Corby said her son — who is diagnosed with Pervasive Developmental Disorder Not Otherwise Specified — is high functioning and spends his days playing video games and writing the sequel to his pre-teen, self-published novel, “Isaac the Runner.” He carried his ever-present Princess Peach doll with him to his transplant evaluation. He takes medicine for an unspecified mood disorder, his mother said. He has shouted loudly enough that police have been called “three or four times” to the family’s home.

Citing privacy rules, the Penn health system said it could not comment on Paul Corby’s case. It released a written statement that said the transplant program reviews “all aspects” of a patient’s condition, including his health status and post-transplant prognosis, and other health problems that could affect transplant success along with the interaction of drugs he takes and those he’ll need after the transplant.

“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.”

After Karen Corby said she was willing to give permission for Penn to discuss her son’s case, health system spokeswoman Susan Phillips said that “the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment.”

Phillips said Penn’s transplant team has performed at least one other heart transplant in an individual with autism.

Thirty-eight percent of patients evaluated for heart transplants during the last two years there were told no, mostly because of other medical conditions that would affect their survival or quality of life after a transplant, Phillips said.

Karen Corby decided to start a petition on the website change.org after reading in January about 3-year-old Amelia Rivera, who was denied a kidney transplant at Children’s because she was “mentally retarded.” Her family’s petition led to an outpouring of support. The hospital apologized and Rivera’s family now says she has been cleared for transplant.

Corby’s petition drew only about 4,000 signatures until Joslyn Gray, a freelance writer from Drexel Hill who has two children with Asperger’s disorder, also part of the autism spectrum, wrote about Paul on the Babble.com website last week. The count had climbed to about 10,700 Monday.

Gray sees an issue that can only get bigger as more children with autism get older.

While autism was just one of the reasons listed for denying Paul Corby a transplant, Gray said she was “extremely disturbed that autism in and of itself was listed as an exclusionary factor.”

With help from other parents, Karen Corby has now contacted the Mayo Clinic and two hospitals in Pittsburgh about putting Paul on their lists.

Transplant patients often face a difficult recovery and are on a complex drug regimen for the rest of their lives. The experience of being rescued from death by someone else’s death is challenging emotionally even for people who go into the experience with superior social skills.

Robert Weinrieb, a psychiatrist who specializes in working with transplant patients at the Hospital of the University of Pennsylvania, said patients were rarely turned down for psychosocial reasons. People who are actively addicted to drugs or alcohol are excluded. In cases of serious psychiatric or cognitive problems, doctors want to know that patients have enough support from family members to manage their medications. Doctors don’t want to have to sedate patients to perform minor procedures. To make the best use of organs, patients must be willing participants in rehabilitation.

Weinrieb, who has not met Paul Corby, said the social skills deficiencies common in autism can be a problem if patients need a long hospitalization.

Steroids, which are given in high doses after transplants, greatly magnify emotions. Weinrieb likened it to drinking 20 to 30 cups of coffee. Someone who already has trouble with anger or impulsiveness is “virtually guaranteed” to get worse on the drug, he said.

Daniel L. Coury, professor of pediatrics and psychiatry at Ohio State University and medical director for the Autism Speaks Autism Treatment Network, said it’s hard to predict who will have a hard time with steroids.

People with autism have trouble with verbal and nonverbal communication and with transitions. They often have limited interests, Coury said. Those characteristics can make them challenging patients, but there are ways to help them through difficult medical procedures. He said he had not heard anything about Corby that would disqualify him from a transplant. “To deny him outright doesn’t sound quite appropriate to me,” he said.

Karen Corby said her son is already on 19 medications, most for his heart condition. Although he always has someone with him, he takes the medicines by himself. He struggles with anxiety and has night terrors. He’s a loner. He has not been diagnosed with a specific mood disorder, she said, but takes a mood stabilizer. He’s been more depressed and upset since Penn said no.

His heart problems make him breathless when he climbs stairs. He has to sleep practically sitting up. His father died of a stroke at 27 — Corby doesn’t know if he had the same heart problem — and she fears for Paul.

He spends a lot of time working on his second book. The first was about a group of kids on a quest. It’s not great literature, but it reveals an active mind. In the third chapter, the hero Isaac tells his mother he’s embarking on a quest. “Do you mind if I go out for adventure?” he asks. “Rick’s candy has been stolen from an evil ogre robot Chris Jerky.”

During a visit last week, Paul answered questions with short, simple sentences, mostly averting his eyes. He is a pudgy young man with freckles and an auburn beard. There was no hint of emotion in his face even when he described strong feelings.

He said he worries about going out sometimes. “I feel like I might get nervous, and I might act out in public.” Asked how he acts out, he said, “I push people. I break things.” His mother said medication helps with that.

Autism, he said, has made him creative. He still feels “desperate” for a transplant. He’s tired of being tired all the time and he’s not scared of the surgery or a long stay in the hospital.

“I don’t care how long I’m in there,” Paul Corby said. “I just want my life to be saved. That’s all.”

© 2012 The Philadelphia Inquirer
Visit The Philadelphia Inquirer at www.philly.com
Distributed by MCT Information Services

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Comments (15 Responses)

  1. Katie says:

    Stacey Burling at the Philadelphia Inquirer should know that considering Autistic people to have “flawed minds” as she puts it, is one of the very ableist ideas that LEADS to people denying folks like Paul Corby organ transplants. It is absolutely not appropriate to include that kind of derogatory and inaccurate language in this story.

  2. Kat says:

    I know from my own experience over the past 12 years that the medications that he will be required to take for the rest of his life are brutal on the mind and body. I feel on edge and angry most of the time and lost most of my friends and co-workers support after a while. My marriage suffered and my four kids hate to be near me. I have trouble doing any daily chores and go in and out of depression because I’m not able to function as a normal human being. The medications affect my body by increasing my weight no matter what I eat and I have gained 75 pounds, thus adding to my depression. Children often point in fear and in meanness because my face looks like a giant balloon. The medications suppress my immune system so I’m often sick, and what family and friends are left don’t come around much in fear that the “might kill me” if I catch their cold. Because anti-rejection medications suppress my immune system, my body attracts itself and has caused Thyroid Disease, Anemia, Scleritis in my eye, over all pain in my joints, and Gluten Intolerance so it makes it difficult to eat, just to name only a few problems here. This article makes it sound like the transplant will make him a new man, but it won’t, it will only prolong his life – but at what cost? He already does not have the mental capacity to understand all that will happen to him or be required of him after the transplant. He already reacts in violent ways when he misinterprets information and I can only imagine how his family will ever be able to control a man who outweighs them, and has the capacity to physical hurt or kill them or someone else while reacting and or acting out to situations that he is not able to comprehend. I really feel for this family since medical advances have come a long way –but it is not able to save anyone from death, no matter their age or current health condition, not me nor him. Birth and Death are fact of life!

  3. Lesley-Ann Neil says:

    I am disgusted and angered that they can even consider denying this young man the life saving procedure he needs!
    My son has Aspergers which is also on the Autistic spectrum and also classed as a Pervasive Development Disorder – He is High Functioning, currently studying for his A Levels, I can only imagine how it would feel if he were denied any medical intervention purely because of this diagnosis

    I wish him well and hope that he gets the treatment he so rightly deserves but Unfortunately I am not allowed to sign the petition as I am not a resident of the US – why not Go Worldwide with this petition?

  4. Gary C. Beck says:

    Go to the press

  5. Marian Boivin says:

    I too have a son who is 23 yrs od with PDD, and I too would be very upset if someone told me they would not help my son live. There should be no reason for him to be denied just because of his mental challenges. He has every right to be saved. This just proves to me more and more how these young adults are looked over in this society. I think changes need to be made in the government, medical, and education concern these young adults. They have every right to know that they are accepted and have every right to be here on Earth.

  6. Mary Kraemer says:

    Karen:
    Contact Deborah Heart and Lung Hospital in Browns Mills, NJ

  7. asdadvocate says:

    “Flawed?” Really? I would say that Stacey Burling would benefit from some sensitivity, education and research before she considers writing another article relating to someone with a disability.

  8. Colleen says:

    It is 2012. Get with the times. Autism is on the rise and your saying no to a transplant because of it.
    There are many different forms of autism on the spectrum. From the brilliant and creative asperger on down. They are all people and all have value in the world. This is an apsalute travistie in this the 21st century!

  9. L Latchford says:

    This writer unfortunately lost me in the first sentence with her ill-advised use of the word “flawed.” I couldn’t go any further. Could this paper please find less biased journalists to cover this issue. Please. This one should go back to journalism 101. Seriously.

    I read about the story from a less prejudiced source.

  10. livingston says:

    As a nurse that works with transplant patients, i have never seen or heard that someone was denied a heart because of autism. He seems to have a great support system. Don’t give up hope for him.

  11. KA101 says:

    Well, I think someone needs re-educated on how not to prejudice the piece in the opening line. (It’s possible that got editor’d in, knowing newspapers.)

    I notice a few people supporting the idea that perhaps this man isn’t worthy of a heart transplant. From the understanding-angle, a quick reread of the article didn’t really turn up anything that leads me to agree. He apparently does take his current drug regimen under his own power.

    That the drugs are a significant life-quality-reducer is good information, but I think that falls under informed consent. His call, not ours, and not grounds for hospital-side denial of a transplant.

    And as for the parent who thinks her son’s life wouldn’t be living…well, there have been parents who act on those sorts of sentiments. We’ve taken casualties as a result.

  12. Shirly says:

    I think the criteria should be in public. We knew the Dick Cheany just finished the heart transplantation. Is this a discrimination issue?

  13. Kat says:

    We have to ask ourselves, is the prolonging of death really worth the cost to his physical and mental wellbeing for a few short years? And while were thinking about that, who is paying the medical bills since he is unable to work and his family would be unable to pay the near half-million dollars in total health related costs? – The tax payers? Our society needs to stop putting public pressure on the medical specialists, and let them figure if and when medical interventions will work, and at what cost to the patients outcome and quality of life they will have as a result of the treatments.

  14. Helen Cooke says:

    I am so sorry for this poor man’s condition but i am going to speak from expierence. I am a 30 year old daughter of a man who was transplanted 6 years ago from dr brozena and her group. They are absolutly amazing.. They are the best doctors I have ever come across. If Dr Brozena could have transplanted him she WOULD HAVE. Their are a lot of steroids and medicine that they need to take after transplant. When they get a heart transplant they are on about 30 meds and a lot of them are steriods. My dad was completely healthy other then his heart and the steroids took a toll on him emotionally and physically. Sometimes what is best for a person is not what we want to hear. I feel for this poor guy but you all need to realize it is THEIR JOB to make sure that the person can handle the transplant. BEFORE AND AFTER!!! and for the person who said go to deborah in browns mills nj.. do some research.. deborah DOES NOT do transplants. UPENN IS ONE OF THE BEST TRANSPLANT HOSPITALS IN THE COUNTRY~!! and HAVE ONE OF THE BEST TEAMS TO DO THEM.. AND FOR DR BROZENA I WILL STAND BY HER BECAUSE I KNOW JUST HOW AMAZING SHE IS AND I KNOW IF SHE COULD TRANSPLANT HIM SHE WOULD HAVE!!!!!!

  15. Danielle Ohlman says:

    I am the mother of an 11 year old boy who is the light of my life who also has significant physical and cognitive disabilities. He has little speech, cannot read or write, he cannot use the toilet, but he is the most wonderful being I’ve encountered. Last March, after months of illness for which no doctor could find the right diagnosis, my son was rushed to the er with liver numbers in the 2300′s. He was suffering from fulminant liver failure. As part of the transplant process, I had to be interviewed by a phychologist to see if I was mentally strong enough to help my son through recovery and life after the transplant. My one worry, as I told the phychologist was that “Logan would not be considered since his quality of life was not what people thought was good enough.” And she said to me, “Those are the people I fight hardest for.” My son is doing well almost a year after transplant. We have our ups and downs, but he smiles and his face lights up the room. He was and is just as deserving as anyone because he is simply human.

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