Saturday, November 30, 2013

Disabled Baby Denied Heart Transplant (My Somewhat Opinion + So Much More)

Just today I decided that I wanted to be one of those people who reads the newspaper and visits CNN to read insightful articles that would make good conversation with others in the coming days. As I happily made my way to CNN this afternoon, I came across this article of a little boy who was denied his heart transplant by his doctors ultimately because of his genetic condition that called for a life of mental and physical disabilities.

Originally the doctors made up their own medical reasons as to why the boy couldn't receive the transplant, but after extensive research by the mother that included comments and research from the man that discovered the genetic condition himself, their reasons were concluded invalid. Even though multiple doctors who specialized in genetics and the condition itself noted that the boy's genetic condition shouldn't prevent him from a successful transplant, the doctors still refused. Prior to being diagnosed, the boy's doctors said he would be a good candidate for a transplant, but after receiving news of his condition they then decided that he could no longer benefit from a new heart. But if according to the other doctors, his condition shouldn't effect his ability to have a successful transplant, then why all of a sudden did his own doctors feel he shouldn't receive a transplant after his genetic diagnosis? That's what the little boy's mother asked herself. All the whirlwind of false reasonings and doctors who eventually quit giving her clear reasons as to why he was being denied the transplant, it was brought to the conclusion that the boy was being discriminated against because of his disability.

The little boy, Maverick, discussed in the article. CNN
The article then goes on to talk about other individuals who had disabilities ranging from Autism to Down Syndrome who were also being discriminated against and given false seasonings as to why they weren't given the chance at a transplant. Even with medical research that shows that children with these delays and disabilities fare just as well medically post transplant as other children, they're still being denied the access to new organs.

At first when the article mentioned the mother self diagnosing her son's inability to receive a transplant as discrimination, I thought that she could have been quite simply overreacting (as all parents normally do in such situations). To be honest, we as Americans often pull the discrimination card quite often whether it be in terms of disability or race, we seem to think our problems arise from our differences to others around us.

But as I read more into the article and read other accounts of individuals, it seemed to piece itself together. The boy's parents were being fed false ideas concerning their son's ability to receive and benefit from a new organ. The article even made clear that doctors have been known to discriminate against people with mental disabilities in terms of who receives the organ.

I'm not here to discuss his individual story though, but more of the idea as a whole. It was the urge for me to read the first few comments of the article that ignited this post. I expected people to be fairly sympathetic towards the little boy, with maybe a few having opposing arguments, but that was not the case.

Of the comments I read (and I didn't read them all as holy cow there were more than 2,500), a good majority of people sided with the doctors. Now, I'm a sucker for everyone having their opinion and I was very interested as to why they thought it was okay to deny this child an organ because he was mentally disabled. Their opinions were ignorant to say the least. Actually, I'm going to say their words broke my teenage heart.

Most comments went along the lines of  "I completely agree with the doctors here. Organs are a scarcity and when they do become available they need to be given to a candidate that can live a full life and contribute to society. You have to think that a child died to give up that organ and it needs to go to another child who can do great things with it."

Their words make sense to an extent. The organ should go to an adult/child that can live a prosperous life and truly benefit from the organ, but it's more of what they're implying. By agreeing with the doctors and saying they had the right to deny this boy a heart (along with what they previously said), they're entailing that a child with disabilities can't live a full life. They're saying that a child with mental and physical delays can't contribute to society. They're saying a child with Autism or Down Syndrome can't do great things, therefore should be bypassed when it comes to transplants and the organ should be given to a normal child.

And I'm not talking about the above being one comment. There were multiple people repeating the same thing. Some even went as far as saying if their child died, they'd want their organs to go to a normal child who could live a long and fulfilling life.

It seems that people's ignorance has led them to believe that those with "special needs" can't live a fulfilling life and it hurts so bad for me to think that others have this mindset. To be honest, I thought our country had for the most part, already overcome the hurdle that stated those with mental and physical disabilities can't amount to anything, and it pains me to think otherwise.

There is so much that I've learned in my incredibly short life span about those who were once deemed worthless. There's a young girl with Down Syndrome who works a full time job at a local restaurant where I live who delivers food to guests with no help or direction as to where the food should go aside from a name and ticket number on the receipt. I have a very good childhood friend who has Autism that I see accomplish great things every day and has never once made me think Autism was in any way a mental disability. There's a girl at my school who wears the tag special needs yet never fails to stop me in the hallway by name to have a conversation with me about my classes and how my day is going. It pains me to think that if either one of these people needed a transplant, they could quite possibly be overlooked because they have a disability.

Quite honestly, I'm going to stop here even though I have so much anger and hurt still pounding inside of me. I'm going to leave this post on the note that I hope you all consider donating your organs in hopes that one day there won't be a need to pick and choose who receives a kidney as there will be an abundance of them.

I also hope that one day my dear friends can all be viewed as equals in the eyes of our society. Have a fabulous day.


  1. That's horrifying! I could understand it if the child in question had no chance of survival after the donation - but it's just inhumane to classify actual human beings, selecting who lives and dies because we now have the choice to save them - something that was impossible in the past. It's like advancing society for a select few, which really, isn't advancing it at all! And doctors, who you would think have the compassion and ability to help this baby, decide not to?? Has life has actually become less precise now that it can be spared?

    Apologies for my frantic comment, I was just so alarmed by this story that I couldn't control myself!! As for organ donations, I also do not stand with the "oh, you'll need that kidney in the afterlife!" or "I don't want someone else's icky bits touching my liver!" folks... If everyone donated - I've read before that the system is opt out rather than opt in some countries - we wouldn't have the incentive to start heading the way we are, as in Never Let Me Go, or growing human organs in animals or other cruel experiments.. Life actually becoming less precious in order to preserve it for some, but destroy it for others, and I can't believe that disability is a factor in this...

    Great post, btw, very insightful )

    1. I couldn't agree more with you! I think organ donation is so misunderstood and considered "scary" by people that most never even consider it. I also understand your frantic comment completely. :) I sat in disbelief after reading the article and its comments over how society views those with disabilities. So glad you enjoyed the post (and I always enjoy yours as well)!

  2. Wow. Just. Wow.
    Talk about dystopian settings being fiction.

    1. The article depicts quite a tragedy, thanks for commenting!