Baby Denied Heart Transplant Because He's Developmentally Disabled (VIDEO)

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chakus Nothing is more distressing to a parent than watching their child when they are sick. You have to put your trust in doctors and whatever they might prescribe, and even then it is hard not to feel a little bit helpless. Imagine how these parents in New York felt when their 6-month old was so sick he needed a heart transplant -- and their doctor flatly refused to help them. That's exactly what Autumn Chenkus and Charlie Higgs had to face when their baby boy Maverick became seriously ill

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Baby Maverick's mother Autumn knew that getting a heart wasn't an easy feat. Especially not at New York Presbyterian, the hospital where her son was being treated. Still, having gone through two operations and continuing to be in heart failure, she thought her son was a viable candidate.

The hospital didn't think so. They viewed Maverick's genetic disorder, Coffin-Siris Syndrome (which can cause intellectual delays in development), as making him a less-than-ideal candidate. They thought that, regardless of how the heart transplant worked, his disorder made him a not-so desirable candidate. This isn't the first instance of doctors ruling out candidates with developmental disorders. It's a shocking practice to the parents of children with Down syndrome, autism, or other disorders which make them less "desirable" for receiving the organs they might need to live.

Luckily Maverick switched hospitals and wound up healing without the need for a transplant. But that didn't stop his parents from standing up and filing a discrimination charge against the hospital. Good for them -- hopefully shining some light on this issue will save others in the future.

Do you agree with the hospital's practices or do you think they need to re-examine their practices?

Image via CNN

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nonmember avatar kitkat

Had nothing changed when the child switched hospitals then I would have agreed that denying him,as sad as it may be,was fair. Transplants,especially hearts,are very hard to get and the wait list is very long. But because he got better WITHOUT a transplant when he switched it makes me question the first hospital he was at. Good for the parents for filing


Its a good thing they didn't do it and the parents should thank their lucky stars because the 1st hospital obviously didn't know what they were doing and the child could have died from their ineptness. Glad he's doing well.

kisse... kisses5050

Just wait till the world of socailized medicine gets going full forced.... and the panel decides who gets the life saving opperation the forty year old married  mother of three teacher who touches lives every day or 20 year year old unemployed slacker with no job no eduaction.... OHHHHHH but the 20 year old is younger and  and a better bet.

nonmember avatar Shannon

I am not sure it's because he was developmentally disable but maybe because of the OTHER medical problems that accompany his disorder or children with the other disorders you mentioned? The child's prognosis and projected life span WITH the transplant is taken into consideration before placing them on the list. I question if this is as cut and dried as the parents and the author are trying to make it out to be.

John Stortz

The child's survivability after a transplant had nothing to do with the doctors decision. It wasn't even a quality of life decision. The child MIGHT have development issues, therefore was deemed unworthy of a chance at life. That's like refusing me my insulin because I'm left handed and/or a depression sufferer. Einstein would have been turned down by these fools, he had some learning disabilities and went on to be a great Theoretical Physicist. These are the types of decisions you'd expect under Socialism!
Oh, wait! We're headed for Socialism with Obamacare. I see you smiling, Mr. President.

keelh... keelhaulrose

Kisses5050, you do realize there are already transplant panels, and there have been for years, right?

Austi... Austinsmommy12

I agree with Shannon. What if his life expectancy is only 5 more years, provided he doesn't experience any more heart complications? What if his disorder is what's actually causing his heart failure, and a new heart would just fail as well? We don't know the specific details of why he wasn't considered a good candidate. A friend of the family has a child with Autism, epilepsy, and cerebral palsy. Honestly, if her heart were to fail, it would be a blessing. She has about no quality of life at all. She's 19, and really doesn't know she's in the world. Tale these into consideration before you jump on the "everyone should have an equal chance" bandwagon.

nonmember avatar RN

As a nurse, I take care of many transplant recipients post-op. There is a HUGE list of criteria that can make you an undesirable candidate. I think this article is very biased and is attempting to make the disability alone the only factor for rejection. We would need ALL of the information before we can pass judgement. Also, when the parents pass away, who will take charge of giving this child the ENORMOUS list of anti-rejection medications needed to keep the transplant viable, as the child will likely never be able to keep track by himself?

Felic... FeliciaDG

Maybe half the transplant committee should be made up of actual parents of children with development disabilities. It's so sad to me that someone who is a child's family "friend" could both make a judgement call that the child has no idea they are in the world and that they don't deserve to be in it. My child has multiple disabilities and while his life may have no value to you, he gives me, his father and multiple other "valuable" people a reason to live and be productive every single day. You can't make a life or death decision based on a person's possibility to be Einstein and change the world. No child is promised to do great things in this world. I have a friend with five healthy and intelligent died of a drug overdose, three are in prison or jail and one has three children with three different fathers while on welfare. If my friend had been denied a heart transplant as a child, her kids wouldn't have been born and our society would have saved tons of money. Sound heartless? It is! You don't make life and death decisions based on crystal ball predictions.

Elaine Kurpiel

Anyone who thinks the doctor and hospitals were correct in this situation has failed to understand something important.  First, age should play absolutely no part in a decision.  Nor should diagnosis.  If a child is severely mentally disabled and has no ability to think or progress in any way, then the child should be placed in home hospice with the parents receiving enormous amounts of support and care.  Second,  again, if someone agrees with the medical profession then they either, have no children; have no idea of the devastation experienced; have not researched the diagnosis.  Since Dr. Coffin, himself, stated there was no reason for the child to be denied, then the denial should be moot.The fact  that Matt did get better is fantastic news but suppose he develops more cardiac problems in the future?  He should then be a candidate for a heart transplant.

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