An Open Letter to Shaun White

Edited – 12/7/13 – If you’re going to invest the time to read this blog post, please also make time to read this one or read this one first because it’s more recent.

In an effort to curb traffic for such an old post, I’m moving the original letter to the “What We Talk About” post. If you really want to read it, it’s an appendix to the good/new stuff.

 

93 Comments »

  1. Did you send this letter? I would love to ‘borrow’ it and send a similar one to him. Maybe we can get a whole group of people to put together letters and send them.

  2. I absolutely applaud you for writing this letter. I am a CHD fighter who advocates for my cause. I stand up for my CHD “brothers and sisters” and speak about my heart condition. I am proud of the scar down my chest, because it tells my story and is a testament to God’s divine plan. It hurts me to know that a fellow CHD brother, like Mr. White, would not stand up for those who are just like himself. Cancer is terrible, but CHD can sometimes be worse. I have spent many nights just asking God to help me make it another hour. I have been in so much pain from surgery that silent tears roll down my flushed cheeks. I have known what it is like to bury many children because of our under studied disease. Please, understand that if Shaun White does not stand up for Liam…I most certainly will. Like I always say CHD kids are survivors, fighters, but more importantly miracles. ❤

  3. It is disappointing, really it is. I remember seeing some advertisement where Chris O’Donnell was in the Heart of the Matter (I haven’t seen the show) and I thought, how nice of him. It means a lot to see people stand up for you, and for someone that has been personally affected to choose something else, makes me (us) sad.

  4. It is almost like we were on the same mode of thinking. I have blogged about this same thing on Heartwaves, just bought the pack of gum to snap a pic of it for my next blog of him and literally saw that same trailer in the movie theater, which was my original stimulation to do a part two segment on this whole thing…..

  5. Amen! As the mother of 3 year old triplets, one of which has TOF amongst the long list of health issues, I applaud you for writing this. It is so true! Thank you for writing this, from one “heart baby” mom to another.

  6. We lost our newborn son Aug. 20th, 2012, after 7 beautiful but terrifying days. He had HLHS. I had no idea that CHD was so common until we discovered our son had one and started researching, and every day I am blown away even more, at how many children are born with a CHD of some sort, and the amazingly difficult struggles they go through. What we went through was beyond difficult, but to have a child years old (if they even make it past their 1st b-day) and seeing all the surgeries and P.T. and tests and other organ issues and skin problems and etc…. I can’t believe how little this is spoken about outside of the circle of people suffering with it. If someone overcame and survived something so dangerous, why wouldn’t they be doing what they could to help others, instead of ignoring it, they know first hand how much they are needed…. ?

  7. I’m not sure I understand why St. Jude is strictly labeled as a cancer facility – it’s mainly cancer but still other catastrophic diseases are included …. Your message is one of frustration that makes its point and gets people to think, but also has a very offensive tone towards it’s intended recipient and I think would make most people less likely to take interest and action

    • Well I guess you could call McDonslds a chicken or salad restaurant but burgers are in 100% of their ads. I’ve NEVER seen a St Jude’s ad w/out a cancer patient, have you?

      You’re the third out of about 75 people to read this in a negative light even though I blatantly absolved SW from poster child status or being identified with his disease. I simply raised the very valid question of why he won’t help our community. How is that unkind or unfair? I also don’t attack cancer patients. My dad and schoolmate and mother-in-law were all cancer patients and I said so. I don’t want to diminish that but CHD should share the spotlight for certain. That is no less than a matter of life and death.

      • I read the comment quite negatively. it has a very negative and bitter slant about an organization that tries to do good. I’m not sure whey there was any need to constantly bring up St. Jude’s as if their focus on cancer were a bad thing and as if their commercial were somehow a personal insult.

      • The only think I could find that might seem remotely negative is this:

        In that pre-Hobbit St. Jude commercial, I nearly screamed when the narration piously implored that “Not everyone is as lucky to have children as healthy as yours.” Really!?! Really, my child has been under general anesthesia with a pediatric cardiac anesthesiologist no less than 13 times for what amounts to close to 10 full days. My son has spent nearly a month in medically induced coma. My son has been packed in ice and taken to the doors of death just to save his life and will go there again to stay alive. My son has had millions of dollars of medical care before he was in kindergarten, and a bunch of movie stars and athletes want to tell me how lucky I am for my healthy children less than 24 hours after the Sandy Hook massacre? Really, St. Jude, you’re going to tell everyone how lucky they are when there are dozens of other just as lethal but less visible afflictions facing children? But I digress.

        And I will say, that if you are showing this commercial in EVERY major movie during one of the busiest times of the year, it’s appropriate to realize that the CDC states nearly thirty six million children in the USA have a special health problem. That kind of generalization that all other family’s kids are healthy is hurtful, and I don’t think it’s wrong to address that. Is it negative to tell the truth of what my own son has suffered without anything like the support St. Jude provides its patients? I don’t think it’s negative, it’s just true.

        If you read the entire article, you will see that I don’t condemn Shaun White I simply ask him why. I openly state that I’ve lost people I love to cancer, so I don’t begrudge St. Jude. I don’t want them to stop raising over a billion dollars a year to fight cancer, I just want people to recognize that other kids are dying too in extraordinarily large numbers. If Shaun White isn’t compelled by that fact, who will be? Who will be? Clearly not those who think a single powerless mom telling the truth about CHD in the enormous shadow of a huge institution and a bunch of famous people is speaking out of turn. I don’t begrudge St. Jude a thing, but people need to know we don’t have that. We don’t have anyone like that, with that kind of power fighting for our kids. We are alone. We are ignored. That’s not negative, that’s honest.

      • I actually don’t remember the St. Jude’s commercial I saw before the Hobbit film referencing cancer at all. It definitely could have and I know most of their ads do but that wasn’t the message I got at all from the ad – I thought they were telling those of us who are blessed with good health to think of Children who aren’t especially during the Holiday season.

        I also never said that you attacked cancer patients so I’m not sure why you felt the need to defend that.

        I was simply trying to state that when I think how would I feel if someone sent this type of letter to me – it doesn’t come across as informative (rather comparative), or welcoming (rather critical) and would deter me from getting involved.

        I assumed the comments section was open for feedback but of course assuming things is never a good idea. If all you’re looking for is praise in your comments section then fine you have a very nice letter and I wish you all the best.

      • Oh, I could have deleted your comment if I wanted to. I didn’t want to. You have every right to your opinion. As far as the cancer attack – I said that in response to Greg who thought I was being unfair to St. Jude. I have given them money. I’ve given my own money to various cancer causes. I’m not demeaning them, but you’re right I am COMPARING them because CHD only gets $5/patient in funding while other disease are well into the thousands of dollars per patient in research funds. It bears comparison. It’s a valid question. And if our nation had an ounce/person more critical thinking it would be a much better place.

      • I’m a mother of a CHD child and I did see the commercial. It WAS offensive and I did feel horrible when (the one I saw was a little different) Jennifer Aniston looked at me and said the comment about my healthy children. In my opinion, Sean White AND St Jude’s have both opened this discussion for themselves. One ladies opinion should not bother you so much. If she didn’t write this, who would? Who would stand up for the CHD children who have backs turned on them. Props to Amanda. Good job, Mommy.

  8. I don’t know for sure that this is the case with Mr. White and don’t want to accuse him of anything, but did you know celebrities often get paid for these endorsements (and at outrageous costs)? I know this first hand from working with some organizations. St. Jude can afford more for one celebrity than all the CHD orgs combined. I looked at the financials of some of the CHD organizations compared to pediatric cancer organization in a blog post one and the difference was staggering.

  9. It baffles me that someone in such a position of him would not think about his struggles with CHD in the past and not want to contribute to his fellow CHD brothers and sisters. I have followed so many CHD families and cried in their times of despair and rejoiced it times of healing or succesful procedures. But even I must claim ignorance in the amount of families who struggle with CHD everyday. After reading your letter I started to recall names just as you did in your letter and it wasn’t until all of this that I realized how blind I was to how close this disease has been in my life all along. But, I can claim that at the time it was a major problem so close to me I was too young to recall the events. UNTIL NOW….thinking about all the scars I have seen on all these little chests brought clarity into my brain. MY OWN BROTHER, was borrn with a CHD disorder where he too needed surguries to be corrected. He is just 13 months younger than me and was blessed to have his last operation at the age of 5 ( he is now 35). In all honesty we never really talk about it as a family because it became an issue of the past in his case. I am by no means wealthy and I too sit at my child’s bedside tonight in a Children’s Hospital(not CHD related) and realize that I can do more to help in this cause. I can be another advocate who can say that this afflection affects more people than anyone can possibly realize. I applaud you for your time and efforts to raise awareness even in your time of need for your own child. I realize tonight that I too am part of this ever growing population of people who lives CHD has been affected. I will not be silent, I will help to raise awareness and I will continue to say a prayer every night for all the families affected by CHD and also pray that through awareness one day there will be a place dedicated to care and research of CHD. And I will assure you along your journey that you are NOT alone.

  10. My thoughts exactly. I have nothing against St. Jude or their needs. I lost a sister when she was only 10 months old to leukemia. I have friends who have children suffering from it. But I also know CHD Children. The only two grandchildren I have or will probably ever have are CHD babies. It breaks my heart to see someone like Shaun White not speaking up for CHD.

  11. thank you for writing. when my son was diagnosed w/ Tricuspid Atresia (and a TEF, duodenal atresia, and mekel’s), i asked the social services..’who is someone..say..famous..who i could write to, look for, look to.. who fights for children w/ heart defects’. the answer was..’hhmm..let me look into that’. that was 11 years, and 14 different procedures..5 heart surgeries ago..she hasn’t gotten back to me yet. i don’t get it!!! When tristan was born, the only way of mass contact was thru email..which even then..not everyone had. I know how you feel, I researched and looked and spent hours in book stores..looking for anything to guide me of how to deal w/ this. barely anything. Today we have this..FB, blogs, google, twitter, etc. I hear you so loud and clear about..the meds, the next thing, the next time, the next visit. we had to see hematology this summer, tristan became really, really sick..and our pediatricians just blew me off. his blood count couldn’t get up over 2000 for 4 moths. so off we go.. for a leukemia check and an HIV test. YEP!! HIV!! You remember..a decade ago..being on the bypass machine and blood transfusions..well, they weren’t what they are today. we are now adding HIV to our blood panel each year. CHD IS that silent killer. CHD is that silent condition. CHD is just plain silent! Like you, i’m so worn out from taking care and being scared..I just gave up on the ‘famous’ who might speak out. Like you, my heart breaks when I see commercials for everything from the worst cancer, diabetes, asthma (which we have too), whatever it is. There has to be somebody out there who has some fame..who will stand up for us. Let’s just hope all these new blogs, new websites, new FB sites..will get us there. i’m sorry for all that you have to deal w/. i feel for you!!! my name is Liisa Searfoss. My son is Tristan. he is 11 years old..blonde, blue eyes, the oldest of 3 brothers. He has seen God..and met Jesus. When he gets really sick..he waits for them to call for him. I’m not ready for him to go to Heaven..but he says it’s okay..if he goes first..he’ll just wait for me. He is really healthy today! So i pray for many years..but we both know..that can change on a dime!! Please keep in touch..thank you..lsearfoss@hotmail.com

  12. I agree with your letter. My daughter was born with CHD and I had never heard of it until she was born. We do need a spokes person with status to get our children in the for front. It did upset me that shawn white was in a st. judes commerical when he should raise awareness for CHD, he was born with it. I feel he is in a position to bring awareness. I am glad there is a st. judes and yes it helps children. But also I get mad because we have no awareness. We do have groups and organizations to help us but they are so limited in funding because we have no VOICE. The only voice we have is us the parents that try to educate people, we speak out to anyone who will listen well in our heads we know that our child will one day die before us. WE sit in the hospital holding our childs hand, we sit hopeless, we cry when no one is watching. WE know how fragile life is… WE just want someone who everyone knows to speak for us. Be OUR voice to America.

  13. And now he has cut his hair off and donated it to make wigs. I am a person on both sides of the fence. I lost my 4 year old daughter to a extremely rare form of liver cancer 28 years ago. Now I am the grandmother of a beautiful 17 month old baby girl who was born with HLHS on the 4th of July. I never new anything about CHD until she was born.

  14. Very well said! My husband was born with a CHD, received his transplant in March 2012, and unfortunately passed away in April due to unknown complications. When I met him (I was 17 he was 21) he was very vocal about his heart defect. We were married 14 years and in the entire time he did what he could to bring awareness to CHDs and the need for more awareness. He even incorporated it in his organ donation speeches. He did what he could being the father of 2 with no real celebrity status (out side of local). It has always bothered me that Shaun White knows what so many of these kids, and adults, are going through, yet he doesn’t use his influence to help bring awareness to it.

  15. I think you need therapy. No one has to speak up for a cause if they don’t want to. That is why it is a free country. I work in a cardiac unit of a hospital, and have also worked on the cancer ward. You don’t know what is happening in this young man’s life, maybe he also has lost people close to him to cancer??? Every CHD child is different, our doctors tell our families not to google CHD too much and read too much about outcomes from other people, each child is different and has a different outcome. It’s great you have a supportive community on your blog but just from reading their responses you can tell each family has had entirely different stories/outcomes.

    • Ha! I am IN therapy and I am not remotely ashamed of it; it’s really helping my PTSD and anxiety. Again, I question if those few people who are being so negative and personally attacking me as if my mental health is in question or undermines the truth of what’s happening (or failing to happen) because I’ve been honest are actually READING the full post with adequate reading comprehension. Like the part where I wrote:

      I love it that you’ve had excellent postoperative health, but if that was the norm for all CHD patients we wouldn’t be losing thousands of them every year. Your CHD experience is laudable, but it is the exception, not the norm. In the past, other parents of CHD kids gave you a pass on advocacy, saying you didn’t want to be labeled by your disease, and we all agreed. You shouldn’t be forced into the role-model status of child-health advocate because of your CHD. What is perplexing is how eagerly you took that role for a disease that needs you far less than we do.

      or the part where I wrote:

      I realize you don’t want to be defined by your CHD, by your TOF. I get that. I don’t want Liam to be defined by his heart defects either. I love that he’s an artist, that he’s hilarious, that he laughs like the clarion bells from Heaven. I love my son for being who he is, and all I want is for him to live and be the person he most wants to be. I understand that you don’t want to “be” a cause, but I have to wonder why you chose the one cause that has infinite support instead of the cause that is invisible but twice as deadly. Instead of the disease you were born with yourself. . . Why not CHD?

      I’m not demanding he step up, I’m simply asking why he won’t. I have every right to ask a public figure about a topic that is public knowledge – that’s why it is a free country. Notice I’m asking someone whose heart condition was covered by ESPN, Sports Illustrated and the whole of the Winter Olympics press contingent. I’m not pestering people who aren’t public figures. I’m simply asking the question. And I was nice about it. I’m not calling him names or telling him he needs therapy (really you work in health care? Given your comments I am concerned about your ability to show your patients empathy).

      I work with dozens of CHD adults and families. Some love to share their stories because of the empowerment of re-framing (which is an actual body of academic knowledge that I studied in grad school), and some don’t. Not everyone has the same standards or needs, and that’s ok.

      Also, let’s not pretend that CHD has anywhere near enough funding. I know, I raise research money for it. I’ve been in touch with the NIH, I’ve been to medical advisory board meetings. I’ve passed a resolution that I helped author at the state capitol. I was invited by the American Academy of Pediatrics section on bioethics to write an article about parent/caregiver education as an ethical mandate. They invited me. I’ve founded two nonprofit organizations, set up parent-information medical seminars and have worked with leading cardiologists. In fact while you were disparaging my character, the head of cardiology at a major and prestigious pediatric cardiology program privately emailed me about this post and wants to collaborate, and the head of cardiac surgery at Miami Children’s wrote the forward to my book. I also have an MS in science writing.

      I’m not some crazy mommy who has lost her marbles. I know the funding numbers and I’ve written about them on the blog before. How much research have you done on the inequity of funding for CHD? I don’t want to take one penny away from cancer, I just want CHD to be on the map too. That is not too much to ask. It’s the least we can do.

      Also, yes, I have a lovely Heartland community who is supportive, but know what? I typically get 30-80 hits on my site a day. In the past 18 hours I’ve had over 5,000. This is not because I’m so great, so well-loved, so controversial, so rude, or in such need of therapy. It’s because one famous person’s name was in the title of my blog post. If that doesn’t make the point what will? We don’t even need Shaun White to tell his story, we just need more awareness and he in in a unique position to help if he so chooses. If he chooses not to, we keep doing what we do, therapy or not.

      • Well responded Amanda, It amazes me that anyone is even commenting negatively against this post. I wonder if they really have a clue. This is one of the single major issues with CHD, PEOPLE do not get that this disease is killing more children a year world wide than any other condition, more than all childhood Cancers, more than SIDS more than any single CONDITION.

        DO you get that people commenting negatively?…..OUR children are Dying, Our babies, Our precious babies. Not to mention that many of the ones that are not dying are spending the rest of their lives being medically and surgically managed, hospitalised, medicated, operated on……DO they even have a clue??
        YES many also have great lives, but our Cardiologists, a well respected and admired leading specialist here in Australia’s has a saying
        “Once a CHD paitent always a CHD Paitent.”
        YOU never stop being a CHD paitent. This condition even if you have a full correction affects the rest of your life…..when you have to get insurance, when you want to have babies, when you want to join the police force, the Army, or even when you want to play a competative sport……Have you tried to get sport insurance for a kid with CHD?, have you ever tried to Travel? PLEASE!!!
        Shaun White might not want to support CHD and that is fine, but he had NO issues with it helping him to the top in his sport……that is a slap in the face for us parents and CHD survivors, that he used it and then turned his back on it!

        My Daughter is old enough to remember his appearance at the Olympics….She was so excited that someone like her could get to the Olympics………Our kids identify with him. Why is it wrong for us to ask these questions???
        As for questioning Amanda’s Mental Healthy status……Please never let you or anyone like you be a Nurse or Dr looking after any of my children……Talk about low blow!!!!
        Forget the Haters Amanda…….you voiced what the majority of us wanted to voice, Love your work and will always support you.

  16. I think that this is really well written – it gets you thinking and feeling. I have often wondered why so much attention is directed towards cancer compared to other often deadlier diseases/disorders (and I am absolutely NOT saying that those with cancer don’t deserve support/attention), or when it does come to cancer why so little money for cancer research goes toward pediatric cancers (3.8% of all cancer research funding according to the pediatric cancer foundation).

    I personally suffer from a genetic disorder that effects the heart among many other things (Marfan Syndrome), that occurs in 1 out of every 5,000 people and is more than likely fatal when un-diagnosed, yet, it still remains largely unknown and under-diagnosed even by medical professionals. I mention that only because It seems odd; the extremely disproportionate amount of media focus cancer receives (and again, not directing any negativity to those with cancer, I too have had many of those I love affected by it).

    I find myself hoping that many people read this letter, including Shaun himself..

  17. This is exactly how I feel as well. When I saw the commercial for a moment I caught my breath thinking OMG, Shaun White if finally going to advocate for us..and then it was cancer. I got right on FB and vented about how uspset I was and how ironic it was. Great letter.

  18. Amanda – AMEN!!! I’ve thought all of this, too. I know someone close to Shaun and had them deliver a letter to him. Never a reply, nothing. I’ve read all the replies and most are right on. Anyone who questions your sanity or motives is themselves, not only uniformed, but crazy. You are one of the best advocates for CHD, and it’s sad there are so many of us begging for help, but no one listens. Our daughter has over 2 million dollars in medical bills. We will probably never own a house. But, that doesn’t matter – keeping her alive is all that counts. Thank you for speaking for all of us and our chidren – even those who don’t agree. ❤

  19. Amazing writing and you have a way with words 🙂 Those who are reading this as a negative tone towards cancer or St Jude are not reading it correctly. It is just the question of WHY Shaun White would choose to be in an ad about cancer (which every knows about and has TONS of celebrity voices) when he refuses to be a voice for CHD which he knows about first hand. This entry is bringing up a question for Shaun White. Don’t be that negative person who tries to turn Amanda into a cancer/St Jude hating person. She said to bad words towards either. Read the article for what is it, a great letter that as a mother of a 9 month old heart warrior (who has had 3 open heart surgeries) loved to read and would LOVE for Shaun to read and reply to. Amanda don’t let the negative nancys get to you. Your letter was well written without malice.

  20. I understand where you are coming from, and I feel for you in your battle to get research dollars and federal research dollars. But I just wanted to add a little about St. Jude – yes, their focus is cancer, but here’s a complete list of diseases (mostly cancer related) that they are actively researching: http://www.stjude.org/disease-summaries .

    And here are some of the things that St. Jude is working on, that while they are not related to CHD, are related to the ongoing care of your child: “side effects or long-term effects of therapy, quality of life, making testing easier on the children, prevention of pain, and issues related to nutrition and stress. There are also tissue and blood banking protocols for laboratory researchers who are studying diseases and searching for underlying causes and cures. The research at St. Jude is designed to include all aspects related to the care of sick children and their families.”

    This reminds me of the sociological discussion of the hierarchy of oppression – who had it worse in America at the hands of white men: Native Americans or the black people they imported? Uh – none of it is good. I’m glad that you are doing what you do as a CHD advocate, but I’m not sure it’s useful to engage in a discussion of what horrible childhood disease is most deserving of research support – the fact is that no horrible childhood disease is receiving adequate funding.

    • She is not saying CHD is more important than cancer or any other disease. She is saying that if Shaun White were to put his voice to a cause you would think it would be one that involves children laying in hopital beds dealing with what he had to deal with with.

      • She kind of did…’What is perplexing is how eagerly you took that role for a disease that needs you far less than we do.’ Whose right is it to say what disease needs a person more?

  21. First of all I’m going to say Hi, and that I’m a teen living with HLHS, and I’ve been pretty lucky. I do agree with you though that it’s a shame for someone so known to help a cause when a different one that affects him is being put in the back burner. I will say, I guess is Saun’s defense, is that it’s not fun being a poster child. He doesn’t want people and the media to pity him, I can see why, he’s an Olympic gold medalist for crying out loud! I have actually seen him talk about his CHD a few times on national television though, the fist was on the Oprah show where Oprah was trying to coax it out of him, but all he ended up saying is “I had some tough times when I was younger, and it just gave me that strive to win.” (Paraphrased) Oprah left it at that since it was right after his Vancuever win. Later on though he did a biography on 60 minutes (called White Hot if I’m not mistaken) in that biography there is about a 2 minute period of him talking about his struggles as a child, mentions his CHD. He also talked about his heart on Larry king live. It was kind of at the end of the interview but Larry asked and he responded. I will say none of these instances were raising awareness, merely just telling his story.

    Now is the point in this long rambled comment where I say Forget Shaun White!
    As a CHD community we do have celebrities fighting for us believe it or not! The thing is that we don’t really see it because they are all involved in different CHD organizations. Like you said we don’t have a St. Jude’s, but if we did, and hopefully we someday will, we will see what celebrities are doing for us.

    These are the celebrities, and semi-celebrities that I know of.
    -Brian littrell: member of the teen crazed boy band the backstreet boys. He has stared his own organization to help CHD kids and families get help with things during treatment.
    -Paul Cardall: an amazing nationally know modern pianist. He had a transplant after dealing with CHD until his early 20’s He started his own organization as well.
    – Tom Riles: opener for the Ellen Degenerous Show, he also started a parenting website called life of dad. He is a heart dad and once a month on his life of dad podcast he does a CHD special to help raise awareness.
    -Mark O’Shea: country singer from Australia. He does a lot at the Vandy pediatric heart center in Nashville TN. He also had ToF.
    -Toby Lister:Australian Olympic 8 man heavy weight rowing coxswain (pretty much the person who steers the boat and keeps the crew motivated) OH look another OLYMPIAN!

    As of now these are the ones I can think of. There are more I do know that, so do we really need shaun white because in my opinion we don’t.

    • WOW !! you give me hope that you have HLHS and you are a teenager!! My son is 6 with HLHS WE ARE LOOKING AT THE THIRD SURGERY THIS SUMMER !! I WAS SO HAPPY TO READ ALL THOSE NAMES, IT WOULD BE NICE TO HAVE SW BUT SOMEDAY HE WILL DO SOMETHING AND I AM SURE HE ALREADY DOSE AND WE DO NOT KNOW !!

    • I agree yes iv seen these commercials and to be honest I do think here we are trying so hard to help spread awareness to get funds for research in a disease nobody know why a baby is born with a broken heart. As a 18 year old HRHS survivor I remember going through a time where I was afraid of my CHD then I got involved with the community and I also for a moment was scared of my future, he could be going through that as well he is on the top of his mountain and he could still be traumatized for all his heart stuff I know I was. I hope that he will be able to one day be apart of our community and realize what a huge influence he can make for kids just like him and the world of CHD.

  22. Lorrie621 nails it. My little one had CHD. We are lucky for her excellent outcome. Grateful every day. That said, she doesn’t like to talk about it. Too many memories, too much fear and pain. She doesn’t want to be The Kid Who Had Heart Surgery. It consumed us as parents for months/years, but I want her to have the freedom emotionally to distance herself if she needs to. We are all on a different, though similar journey. We all deal with the myriad emotions in different ways. Perhaps SW will some day want to/feel comfortable with getting involved. But I’m inclined to cut him generous slack on such an emotionally-loaded issue. Simply because, although I lived through it as the parent, I myself do not have CHD.i myself did not have the surgeries. I myself did not experience what my daughter experienced. I wholeheartedly believe that the patient/child is entitled to his or her own feelings about their medical history, separate from mine.
    I wish you only good things in 2013.

  23. Thank you for this letter a fellow heart mom posted it on facebook. I am grateful she did that because I found your blog…….so much of our lives are different but so much parrel. My heart kid is 9 named liam and then his brother is 13 months behind him. ( they do have a younger sister as well)

    Last night I read a lot about your family and liam and as so many heart moms have said its so wonderful to read about heart parents who “get it” and are trying to make the heart world a better place. This liams mom thanks you from the bottom of my heart for making the world a better place for our heart kids.

    Darcy

  24. Awesome job with letter…think more and more people should be aware with children with CHD ..my son 18mths old now has truncus. He had open heart surgery at 4meeting days old..and getting another one done in summer 2013 as we also have a 5mth old. People need to know its hard on families cause at less one parent has to work to just make ends meet. Again thanks for writing letter to Shaun maybe we can start seeing more awareness about CDH

  25. is the same with what i am born with hydrocephalus. there is 1,00,000 babies born every year with it. but it seems hardly any one knows about hydrocephalus. it is like chd. where hardly no money goes for it. i was born with a heart defect and hydrocephalus. and had a stroke as a baby. i understand what u r saying

  26. Very well written, I really hope he does see this letter, I’am a mom to a CHD angel and I run his Facebook page still to try and raise awareness and get prayers for our CHD warriors. Baby Leelynd aka Mister Man ❤

  27. Love it 🙂 Very much agee!! Mr. White needs to come out of the “CHD Closet” and help our community. If he didnt have heart surgery, he wouldnt be a famous snow/skate boarder. He needs to give back something to the CHD community. Once you a have a CHD, you have it for life. Why wouldnt you do something to help is beyond me, Mr White? He could be such a positive role model for other CHD kids/adults who are struggling, since he has done so well with his life. He could give them hope.

  28. My daughter was born in march with the same CHD (tetralogy of Fallot) as him… It’s very disappointing to see him raising awareness for childhood cancer (I honestly have nothing against raising awareness for it I myself do the relay every year for my father and grandfather) but no matter what he thinks (like being done with his CHD) he still has it it is not curable, it is a lifetime of surgeries, repairs, treatments it is never over for these babies.. and he should be proud of his CHD background not ashamed to spread awareness. All of us heart moms, dads, grandparents, and survivors need to send him a personal letter asking for him and other celebs to raise awareness

  29. A can’t believe you are attacking him for supporting the great works of several charities, but you’re just jealous because he won’t support yours. I work with a celeb as well and people attack us for not doing enough, even though we do a TON. There are plenty of celebs and athletes who do nothing at all. But the one time we can’t grant every person’s wish, we are a-holes? Makes people not want to do ANYTHING when we get attacked like that. Justin Bieber can’t meet every sick kid… or he’d never be able to work at all. Same thing here. Wake up to reality and apologize to him… and thank him for what he does.

    • Wake up to reality and apologize to him… and thank him for what he does.

      Dear Shaun White, I am so sorry you need people like Justin Rice to defend you from an obscure middle-aged mother with a seriously ill child from the horrible affront of asking you legitimate questions about how you prioritize your extraordinary philanthropic power in light of of very public information that anyone anywhere can find by reading Sports Illustrated or watching ESPN.

      I’m truly sorry that as a multimillionaire with so much fame and prestige that Mr. Rice believes I have any real power to adversely impact your life, and I’m also sorry to say that Mr. Rice is entirely wrong. Had I that power I’d have thousands of regular readers rather than hundreds, and my influence would be like Gladrial’s. He is right, I am jealous that my son will likely face organ failure, organ transplant, and premature death because we don’t have sufficient awareness or funding. And if me wanting my child to, you know, not DIE, is a character flaw, then I am guilty as charged. Oh, and thank you for being so famous that my gut reaction to seeing you in a commercial caused me to have record (but fleeting and temporary) traffic on my web site. It was very nice of you to be so well-known.

      Sincerely,
      Amanda Rose Adams
      (you still don’t know who I am)

      Happy Justin? Now you can go defend celebrities the world over while children continue to die of CHD. Glad your priorities are in the right place.

      • My reaction to all this is sadness. No one in my opinion is really right or wrong in this discussion. Emotions run so high when anyone is involved with sick children, no matter the disease or illness. Sick children make us all sad, make us all want to do something, and seem to make us all very competitive for the time and money for whatever your cause is. I get it, it makes complete sense why we all react so emotionally when our babies and children need us to fight for them. It is exhausting, it is expensive, and it is a fight Imam sure anyone with a sick child would not wish for anyone else. The reality of the matter, to me, is the children. Each of us, no matter who we are should do what we can for the cause of all sick children. For the children have a hard time doing for themselves.

        I hope everyone reading this will continue to fight for, speak out for, challenge others for, the cause for which their child or loved one is fighting to survive. This speaking out, even if it causes some to disagree about motive or the tone used, is a forum which helps the caregivers, parents and others with sick children to express their true feelings. REALLY people we are all angry and upset that any child has to suffer whether from an illness or a disease, from an accident or a shooting, or from some other event. Unfortunately, it happens.

        Take a moment to breath, be thankful for what we have….the freedom to write this blog with out censors. To know that we are not at all perfect creatures, but we must love and tolerate each other.

        Thanks for all the opinions I have read here. They do have purpose and for that you should all be proud. Speaking out, whether good or bad, whether for or against, is your right.

        Prayers go out to you all please continue the dialogue. It is healthy.

    • I wouldn’t say she’s attacking him she’s simply wondering why he doesn’t help educate people about CHD in which he has she didn’t say he was wrong for helping other charities and apparently you have never dealt with CHD personally so you have no idea how under funded and under educated people are about CHD

    • Justin-
      If you had a child with a congenital heart defect, and saw the St. Jude commercial with Shaun White in it, would you not be a slight bit confused?

      I understand the whole “people attack us for not doing enough”, but that is the whole reason behind supporting the CHD community. You see, if Shaun White supported a CHD charity, he (and/or his PR Firm) would never have to worry about any of the so-called “angry” people. The completely rational thinker would not have a valid argument to the statement of “We wish we could support all charities, as there are so many great ones to choose from. However, Mr. White was born with a congenital heart defect and has had two major heart surgeries in his life. He has overcome so many challenges with these surgeries, and yet, he is still one of the most successful Olympic Gold Medalist of all time. We just feel that supporting CHD organization xyz provides hope and inspiration for children, just like Shaun, born with congenital heart defects. In fact, many CHD parents are told that there children will not live normal lives and have no hope to participate in every day activities like sports, much less become an Olympic athlete. However, through hard work and perseverance, Shaun has proven everyone wrong and provides all CHD children and their parents with hope. And, by representing XYZ CHD organization, we feel Shaun is utilizing his fame in the fashion that makes the most sense?” In my humble opinion, this would deflate all of those so called “angry people”, as there is no sane person who could argue with this mode of thinking. And, if they did, they probably would not be someone that your organization would want to work with anyway.

      The fact that Shaun is representing St. Jude is not the point of our argument. It is the fact that he is not embracing and representing a CHD organization. It just makes absolutely no sense at all. And by not embracing the CHD community, he certainly is ruffling feathers of many in the CHD community.

      I actually find it hard to believe that you are so perplexed with this reaction. I cannot speak for Amanda, but I am not angry. I am just completely and utterly confused. I am the founder of Heartwaves.org and wrote about this same topic over the summer. I have listed the link below, if you care to read.

      http://www.heartwaves.org/congenital-heart-defect-information/?Tag=What+if+Shaun+White+Were+Listening%3f

      Lastly, if anyone needs to apologize, it is Shaun White or his PR firm.

    • UNTIL YOU HAVE BEEN OUR SHOES YOU HAVE NO RIGHT TO ASK HER TO APOLOGIZE TO HIM !! I AGREE HE PROBLEY DOSE THINGS WITH CHD THAT WE DO NOT KNOW ABOUT !! BUT HER POINT IS WHY WOULD YOU NOT TALK ABOUT CHD IF IT IS A PART OF YOUR LIFE !! THERE IS NO WRONG OR RIGHT WITH THIS IT IS JUST ABOUT KIDS !!! I THINK IF YOU KNOW FAMOUS/CELEBS PEOPLE THEN PUT IT OUT THERE THAT SW SHOULD DO CELEB APPRENTICE FOR CHD !!

  30. Very good letter!!! Brandon Weeden of the Cleveland Browns is also a CHD advocate and is donating money toward a hospital in Okla city to help with CHD and keeping good doctors at the hospital. There was also a segement about him and a friends son who has CHD on ESPN last sunday. Bran don being a professional QB can now be a paid spokesman and would be proud to help out with the CHD community.

  31. I was born with a CHD, I am 19 and I’m a member of the lucky one who are healthy at the moment. I had never heard of Shaun White until the Olympics and I was so glad to see someone “like me”. I knew I was able to do some sport even if I wasn’t supposed to, but I never could have imagine a CHD survivor becoming an olympic athlete. He has been like a revelation for me. He really inspired me, not because I wanted to become an athlete or something like that, but because he showed me I could do big things too. That’s why I’ve been really interested in his life (and of course because I love snowboard). I learnt to know him and I discovered a really nice guy : happy, smiling, healthy, generous etc… But as everybody here, I was disappointed. Because when I first read he had already talked about his condition, I was pretty sure he was doing his best to reach awareness. And then I found out it wasn’t the case. I don’t live in the US, and in my country people seem to be even more unaware of CHD. People are often staring at my scar as if it was something rare and a very few people know where it comes from. And I want them to know that it happens all the time. I want them to realise that many people have that scar. And that it’s not only about a scar on a chest, but about surgeries, medication, hospital etc…
    Today, I’m asking the same question as you all. Why doesn’t he want to get involved in CHD awareness ? I don’t want to blame him. I’m not sure I would accept to talk about my condition. And I understand he doesn’t want to be the athlete with the heart condition. I wouldn’t want that, and you wouldn’t want that for your kids. But he can help. He has already told his story, he doesn’t have to say more. He could just tell people we need funding. He could tell them he’s lucky but not everybody is.I think he would be the best person to talk about CHD, just because he knows what it means.
    I wouldn’t be immediately concerned if he decided to talk about it but I really wish it to you. And everything that happens in the States then happens everywhere in the world, so it would maybe help somewhere else. I am optimistic … Maybe he will when he grows old.

    Finally, Mrs Amanda rose Adams, you are totally right in your letter and I hope it will help people to understand.
    I wish you all the best for your little son.

  32. I couldn’t agree with the writer more!! Whilst so many recognized organizations charities, diseases, causes get so much publicity, exceptional funding, extraordinary trial testing with millions of dollars be spent looking into advanced treatments for cures for all types of illnesses/diseases! THEN THER ARE SO SO MANy that are overlooked never to be recognized or acknowledged! THIS IS JUSTT HURTFUL and UNACCCEOTABLE!! This is exactly what we as an organization stand for, we ONLY look for those that are NEVER recognized! They nEed us SO BADLY! The problem is everyone are sheep! Come on all you Shaun Whites out there recognize the desperate plights and needs of those organizations that aare DESPERATELY in need! Ever every charity needs help BUT why IGNORE those that are desperately in need and ESPECCIALLY those that of children diseases are inn so desperately in need of. We focus only on children whose parents have died of HIV/AIDS children headed households who may have contracted the disease themselves BUT ONLY THOSE HOUSEHOLDS/ORPHANAGES that are NEVER RECOGNIZED and that get no funding!
    It would be so wonderful if the recognized names could come on board and together Make a dIFFERENCE to aid in advanced cures – having a recognized name to a cause would make a huge difference in giving a better life to those who just can’t fight it alone.. Please visit our website http://www.loveglovecondom.com to help raise funds for those orphanages in son the aFRICAN continent for which we have 8 that we have adopted, children that are desperate to be happy normal fun loving and allowing them to laugh long and loud and often!

  33. I have been a peds cvicu nurse for 13 years, I honestly can not imagine doing anything else. I married Scott, my husband who has CHD. We have rallied in Washington to help raise awareness and money. I couldn’t agree more with what you said!

  34. Thank you very much for this amazing letter! I have thought many of these same things over the years too. Last year I was going to do the ACHA Heart Walk that was going to be here where I live, but I ended up not doing it because no one seemed to want to support the cause I was walking for and it saddened me. I wanted to walk for every child and adult who lives with this disease that no one can directly see. I understand how you feel because I myself am a 40 year old complex CHD patient who was not even diagnosed until age 2. I have lived my whole life with this disease that no one seems to want to care about or talk about, because its not childhood cancers or such. But we CHD kids can be and are just as sick but in a different way. Some of go on to live and some of us do not. My mother was told when she asked the cardiac surgeon what my life expectancy would be and he told her that he “had no idea how long she will live because we’ve never had anyone live long enough to know.” How scary is that for a mother? And this was in the early days of pediatric cardiac surgery too!
    I have to say that growing up I always felt alone with my disease because I never knew anyone else who had what I had. And if someone found out that I had CHD, they’d ask something like “oh do you just have a valve problem or hole?”, like it was no big deal. And as a kid, I never really understood what it was that was wrong. I just knew I had some kind of hole and some vessels were in the wrong place and that I had some kind of patch in it. It wasn’t until I was an adult and luckily found my Adult Congential Cardiologist (and I am a peds nurse as well), that I finally understood how complex and rare my form of CHD is and that most children that are diagnosed with my type of CHD do not usually go on to survive. I was born with DORV, or Double Outlet Right Ventricle, which is one of the rare forms of CHD. I also have pulmonary hypertension and SVT’s as a result of my CHD. We all need to make this disease and severity of it known to everyone, including celebrities. It disgusts me that Shawn White would rather talk about cancer than the disease he was born with! I would fight for CHD to become more supported over any other disease because I know what its like to live it every single day for the last 40 years of my life and he should as well!
    Thank you for you for time. You and your son are an inspiration to all of us CHD patients! HUGS!
    Kim

    • Kim, I have tears in my eyes as I read your reply. You are the oldest person I have heard of with DORV and is still alive. My son, Will, is 19 born with DORV, ASD, VSD, Co-arctation of the Aorta and his PDS didn’t close at birth and we’ve been told he probably won’t see 30 because of his heart. The oldest person we knew with DORV died at 17 and Will has outlived that by 2 years. I have so many questions to ask you. Is there a way to get in touch with you?

  35. What a powerful well written message.I absolutely agree with everything you have said and wish I would have said it myself. It should be screemed from rooftops ,on billboards. But sadly as you wrote it is US parents or families that speak up.I pray for your Son and your family my god continue to give him the strength to be the Heart Warrior he is ..xoxox Priscilla Rivera
    Mother to Christian DCM pre transplat

  36. I jyst happen to stumble upon this blog due to reading a post on facebook. My cousins son suffers from CHD and I have been blessed to see their families strength and love through the trials and tribulations. I am a mother of three healthy children, but I have seen death of children before. I buried my own twin boys when they were born prematurely and recently watched my best friends niece pass away at the age of 19 after battling brain cancer for four years like a rockstar! Those two things were actually what paved my path to being a registered nurse in an oncology icu. The reason for my comment, you may wonder? There is not a word in this post that is negative at all. This blog came straight feom the heart of a mother whom doeant understand why a celebrity with the same disease chose to sponsor a disease that already has so much publicity. Again,these words are coming from an oncology nurse… I honestly know where her frustrations come from… sheisn’t putting down St Jude and their gregreat cause, she is simply stating that she wishes the same awareness existed for CHD. Simultaneously, I feel the same way at times as I see all the publicity given to Breast Cancer Awareness and I watch numerous patients battle and die from cancers I never would have know existed had it not been for my work. I felt extremely compelled to comment on this because I was saddened to see that people couldn’t read this blog for what it truly is… the words spoken from the heart of a mother whom would do anything for her child.

  37. Sorry to lsay this guy is a lost cause. He does nothing unless it betters himself. He gets paid for EVERYTHING he does. No dough? He is out. Just basically a scum who doesn’t care about others.

  38. Oh man, so sad to see this is a post from last year and that it’s not just gone viral all of a sudden. Well maybe it still will.

    Either way, I was cheering and shaking my head and riding the roller coaster with you through your venting. Whether or not it does bring awareness and funding and heros to champion CHD causes, I was moved as a heart mom. So thanks to you. And really solid, passionate writing.

    Don’t let the haters hate bother you. You wrote this for the heart community primarily as a mother and member of the heart family–it speaks well of our family, whether or not we get the media or masses ‘ attention.

    Thanks again for this. Going to go poke around your blog some now… 🙂 Hope your son is doing well. I have to read up…

    ❤ jeni

    (my daughter has digeorge and had an interupted aortic arch repaired and then a ballooned aorta through a cath then another open heart for subaortic stenosis. She will likely have a couple more open hearts down the road.

  39. i dont agree with this letter, its horrible… yes it would be nice if he would support chd obviously, but maybe he just wants to forget about it and put it behind him? maybe he knows someone with cancer and chooses to support that charity, really its up to him to show support for what ever HE wants to weather it be cancer chd or something else, its like our family,, My partner has epilepsy i have crohns and my son has chd, my parteners dad has COPD, i could go on but we only really show support for CHD, what if i became famous and i didnt raise money for crohns would i get slated too? everyone cant support every charity, he has decided to support cancer, which is his right to support what ever he wants, i dont think its fair to blast and have a go at him, he can support who ever he likes. this letter i think is terrible. Living in the UK we havnt seen the advert for St Judes but this letter, its like its saying “who do you think you are supporting a cancer charity how dare you when you have CHD” So what! he has decided to support cancer thats HIS choice. i know youll prob have a go at me now but im not bothered. he is a human being and can show support for who ever and what ever he likes without being bullied into supporting another charity

    • Nope. I won’t have a go at you. You have every right to your opinions and you didn’t attack me personally. Though, I don’t consider myself a bully as it pertains to celebrity, maybe a gnat in the ointment, but that’s the limit of my influence. I don’t agree that the post was horrible, nor do I worry about either you or I ever being famous enough for millions of people to care much what we think. Jennifer Lawrence’s (whom I love) hair cut got more press in a day than CHD will get in a year. This is just how it is.

      What I find horrible is that I’ve written far more complex, beautiful, meaningful, and well-thought blog posts (literally hundreds of them) that get maybe 100 hits each, and this post I wrote a year ago, which is not my best or most insightful, has received tens of thousands of hits, seven thousand in the past 12 hours alone. I find it horrible that my book sold roughly 3,000 copies but this one post I wrote in a flash of a winter’s afternoon has drawn as much ire and awe as it has. I find it horrible when strangers say they can’t stand to hear about CHD because it makes them sad, yet people have no qualms about reading things that make them angry. I find it horrible how happy we all are to be angry. I find it sad how hard it is to invoke a thoughtful dialog.

      I was angry, so I was heard. I stand by what I wrote. I wrote it, and I own it. But, I also wrote a postscript that touches on some of your very points – thus I shan’t have a go at you. I would, however urge you to read on before writing me off.

      • You keep calling him a celebrity……he’s a snowboarder, a good one I guess. He’s been in the Olympics…..big deal. I think your making him into something bigger than he is. He’s a small fish in a big ocean. If I was you, I would be researching who really could help your cause. Even if you have to research around the world. I’ve spent way too much time at Childrens Hospital, my daughter was premature, my grandson lost a kidney, my granddaughter was diagnosed with a rare form of eye cancer….lost both eyes to it. It breaks your heart seeing any child in that hospital….no matter what their there for. No child should have to go through what they do. I’m sorry, but I did find reading your letter came accross as an attack on him and St Judes. But like I said, I don’t see him as a celebrity. I wish you all the best with your son, live everyday like its your last. May you have a very Merry Christmas.

  40. Hi amanda as a fellow heart mum I applaud you for writing this letter there never seems to be any recognition from stars especially the ones that have chd themselves and yes cancer is devastating but chd is more so lots more babies are born with chd than people know not to mention all the undiagnosed chds It breaks my heart when a chder passes n theres so many just in a week 4 lil ones have lost there battle n I cry as if they are my own u keep doing what ur doing amanda rose adams if nobody speaks out then noone will ever know and I hope n pray that one day someone famous will speak out for us all and our amazing heart warriors xx

  41. I have a grandson who will be 9 on December 12th, he also has CDH ,TOF at 9, he has had 3 open heart surgeries and will need more in the future ~ how many? ~ we really don’t know ~ they also have a group of parents of children with defects know as Mended Little Hearts, but that is the only support they have ~ I do understand it is hard to see a child with cancer ~BUT I KNOW it is hard to see a child like my grandson suffer with no awareness support

  42. “I’m not demanding he step up, I’m simply asking why he won’t”

    That right there is why you are wrong for writing this. You speak of “freedoms” and “rights” quite a few times in this post (and it’s responses), yet you fail to recognize that you are the one questioning someone’s right to do what they want. Your opinion on what he should do, as well as anyone besides himself, is absolutely irrelevant. It has nothing to do with him being an icon at all, so please don’t use the “why are you defending famous people?” thing again.

    A person will choose to do (or not do) whatever they want, and it’s not up to you to question their motives for any reason because you’re not them, and that is exactly what I see happening here. If a doctor saves one patient while another passes away somewhere else, you don’t question the doctor. You thank him for doing what he did and move on. In this case, he’s choosing to support another campaign, plain and simple. You’re questioning his decision to not be on “your side” when you should simply just tell him “Hey, thanks for doing the good that you have done, which is more than most people on earth will ever do in their lifetime.”

    This letter did a good job of hiding the true cause through plenty of condescension, I’ll give you that. Many people who read this and posted that they love and adore you don’t see it because they don’t want to. They’re in the same situation as you (or similar) which is exactly why. You could have saved a lot of people a lot of time by simply writing what you meant in the end, which was this:

    “It’s great to see you supporting St. Jude’s, but I don’t believe that it’s enough. I feel it’s my right to question the good you’re doing for them and try to guilt you into supporting my cause as well. I’m not asking that you stop supporting them, but it just doesn’t feel like enough. Come join ours and all will be good (don’t worry about the hundreds and thousands of other medical organizations who fight for their causes throughout the world) Thank you!”

    See? Much easier

    • A person will choose to do (or not do) whatever they want, and it’s not up to you to question their motives for any reason because you’re not them

      touché

      and you’re not me. Round and round and round we go.

  43. Regardless of whether Shaun White supports or doesn’t support CHD, reading your letter and investigating CHD has made me more aware of how many people suffer from this disease. I have a child and spouse who suffer from different medical conditions. It is a daily struggle for them both and it is heartbreaking for me to watch them battle their illnesses. I’ll give you this, I clicked on the link because I saw the picture of Shaun White which got me curious. What you say is true, when there is a well known figure attached to a disease, more people are interested. Not necessarily because the disease is more deserving of interest, but with a well known person representing, people listen and relate more because it’s someone “they know”. I applaud you for speaking up and voicing your opinion. Hopefully more people will see the need for awareness

  44. I agree that he and others should do more for chd. My boy was born on September 29th 2013. Today is his due date. We knew all along that he had TOF due to multiple losses in the past, a very close I was kept on him. He was born at 1lb 15oz. We didn’t know if he would even make it to get his full repair. On The 3rd of December he was supposed to have a shunt put in. He also got the rhinovirus when he hit 3lbs setting back his heart surgery by 3 weeks. The surgeon came to us 10 minutes before he was supposed to do the shunt. Bennett was now 4lb 3oz. We thought he was going to say that he could not do the shunt for one reason or another. He told us that he was going to do a full repair. Everything went well. Bennett is satting in the 90’s with only 23% o2. As I sit here in the hospital with my 2 month old preemie chd son I know that there are another 40 heart babies here at morgan stanley childrens hospital nicu. These babies and kids dont have a voice. Somebody that has gone through chd and made out as well in life as Shaun White should definitely publicize it more. I think it would even be good for him and his career. Where is your answer Mr White?

  45. I am now 20 years old and I was a baby born with TOF. In the next 2 months I will have my second open heart surgery or be participating in a clinical trial to have my valve replaced in a less invasive way. Research means the world to me. I consider myself lucky because I was able to play sports as a child and in high school. I am disappointed that Shaun White isn’t helping our cause. It should be his cause too. Some day with enough people advocating for CHD it will be more commonly known, and have more research funding. No matter how small every little thing helps.

  46. I am 30 years old and was born with Truncus Arteriosus Type 1. I’ve had three open heart surgeries, and my team of doctors is currently deciding what they want to do with me, since I am in need of a 4th one. My heart function is fine, but my replaced tissue valve is one of the oldest ones on record. Anyways, I came across your blog after searching for Shaun White, As an adult congenital heart defect survivor, I’d like to offer up a different take on Shan White’s failure to advocate for children with CHD.

    Shaun White was born in 1986. I was born in 1981. To give you some perspective on this, there were no support groups for parents for children with CHD. There were no “beads of courage” programs, no support groups whatsoever. In fact, only a handful of surgeons were even brave enough to operate on children with Congenital Heart Defects, and the survival rate was dismal. When my parents found out I had Truncus Aretrosus, they had to use my Uncle’s access to his law school library to find the best surgeon. And so I flew to San Francisco for my first heart surgery, then to Chicago for my second. Finally, Pittsburgh for my third. The technology that is available to us now, simply wasn’t available to my parents. They were simply trying to do whatever it took to help us survive.

    I am 30 years old, and have just now been coming to the realization that I need to advocate for myself, and for other children born with Congenital Heart Defects. My parents torn on my decision to speak out more about my heart condition, because they do not want me to be looked at any differently. Like Shaun White’s parents, they were adamant that I be treated just the same as everyone else. For a lot of parents with children with congenital heart defects born in the 1980s, this means that they IGNORE the heart defect. It’s kind of a “you’re fixed, you’re fine, move on with your life” mentality. And I can’t blame my parents for wanting to be like this.

    The thing about Shaun White is, he’s still young. He will have to have more repairs, and from looking at the interviews with him about it, I don’t think he likes talking about his heart condition. He looks very uncomfortable discussing it with the media. His response about his six inch scar was EXACTLY the same response I used to give “oh, I had a couple heart surgeries before I was one years old.” Really nonchalantly. In a “it’s not that big of a deal, can we please talk about something else” kind of way.

    And the thing is, to me, for a very long time, I wanted to keep insisting that I was fine. I had witnessed my friends dying, had spent numerous times in hospitals growing up. And I understood just how lucky I was to even be alive at all. And I wanted to say to everyone who looked at me like I was something special, “please don’t. there are so many more children who need more attention than me.”

    People deal with their health conditions differently, and while I do wish that Shaun White was more of an advocate for children born with congenital heart defects, I am not about to criticize him for how he handles his.

    PS– when I googled shuan white heart condition, your blog was the first that came up! So, I think you might expect to have a bit more traffic what with the Olympics and all!

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