Hero in the Halfpipe

With the Olympics drawing to a close, the Congenital Heart Defect (CHD) community has been abuzz about the exploits of a talented young man you might have heard of. Unless you have been completely out of touch for the past two weeks, you’ve probably heard about Shaun White.

We love the guy; after all, he’s one of us. Shaun was born with a heart defect known as Tetraology of Fallot (ToF) and he’s out there living his life and not letting anything slow him down. A lot of CHDers have (almost) normal lives, too, but we aren’t Double Gold Medal winning Olympic Champions. And if he has any say in the matter, he’s aiming for the next Winter Olympics, too.

Homeboy is living LARGE. (Yeah, I’m a little jealous! Who wouldn’t be?)

There is a small problem here, though: Right now, Shaun is in the perfect position to be a great spokesman for those of us living with a Heart Defect. The public loves him. Heart parents, Cardiac Kids, and even tired ol’ Funky Hearts look up to him. But he just doesn’t seem to be interested!

“I had heart problems,” he said on The Oprah Winfrey Show – the closest she has come to discussing CHDs in 25 years. HAD? I thought. What happened? Where did those “heart problems” go?

But when you think about it, his comment starts to make sense. Every heart defect is a little bit different, and affects each one of us a little bit differently. Shaun is obviously pretty healthy (two Olympics, two Golds, remember?), one of the more fortunate CHDers that I know of. And he’s only 23 years old. He’s young, he’s healthy… and he may not realize that a Heart Defect is a lifetime thing. And that is when it hits you:

Shaun White may be one of the many CHDers who has been lost to good Congenital Heart Defect care.

I am hopeful that as time passes and this young man grows a little older, two things will happen: One, that he realize that he isn’t invincible after all, and will find a good Cardiologist who can help him keep that wonderful level of health that he has. Way too often, CHDers “crash” as they grow older – not just the normal effects of age, but age coupled with an old, tired, damaged heart bring us down more than usual. I certainly hope that he can avoid that.

And second, perhaps Shaun White, with a little age and maturity, will become not only the Hero in the Halfpipe but a true Heart Warrior, fighting for all the CHDers who cheer from the sidelines.

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7 Responses to “Hero in the Halfpipe”

  1. slamdunk Says:

    Good post. I hope he takes the opportunity to promote the good effort.

  2. Andrea Says:

    We have been very excited to watch Shaun White in the Olympics. I think his story is inspirational and I like him. And I’m not sure if you’re aware of how he does give back to the community: When I checked out his bio I was pleased to find out that he spends time at Target House, and also works with Make-a-Wish and Heartgift (source is shaunwhite.com).

    • Steve Says:

      Well then, I stand corrected! But my post still stands – I am hopeful that continues his advocacy on a national level (and of course I wish him the best of luck and continued good health!)

  3. Jennifer Says:

    I recently wrote a post on this exact same thing as well. I do believe that the amount of time and money and that gives to causes that affect children and family with CHD are admirable; however, I completely agree with you. For someone who is loved by so many and with the amount of money and influence he can have, I hope he continues his efforts and to talk about TOF and the affects and repercussions of CHD on a national and international stage.

  4. Linda D. Says:

    I am so with you on this post, Steve. Since my daughter has the same defect, I have really admired the guy. When I learned about this, I was amazed at what was possible with these kids. I spoke with Gabby’s cardiologist about this, and he said that it was possible, but there were still things that needed to be watched for lifelong. I really wish that Shaun would use his fame to promote lifelong follow-up for CHD’ers as you were talking about. (But, wouldn’t the Olympic team prevent him from competing without regular follow-up and medical clearance knowing his history? No way to know for sure.)

  5. Lisa Says:

    Actually, it would be cool to hear his parents talk about his CHD. He wouldn’t remember the surgeries, so naturally, it’s not a big part of his life right now.

  6. Brandi Says:

    I guess I see it differently. I don’t think a child with a heart defect is obligated to spend the rest of their life talking about it. If they want to, great, if not, it’s their story. As for not getting good CHD care, I have read a several articles and seen interviews where he has said he sees a cardiologist on a regular basis. This SI article is old, but mentions this towards the end: http://sportsillustrated.cnn.com/features/siadventure/29/boarding/
    I hope my son grows up to be just like Shaun and that his heart defect is something he thinks about once a year. I realize many people with CHD don’t have this option, but some do and I think they have a right to live their lives on their terms.

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