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The Face of CHD

Jun 6

Posted by: ACHA
6/6/2012 10:21 AM  RssIcon

By Christy Sillman

Where is our Michael J. Fox? What he’s done for Parkinson’s is amazing and commendable. He’s personalized the disease for so many out there who aren’t familiar with it. He’s owned his disease with such honor and respect.

Congenital heart disease is the most common birth defect and there are over a million adults living with congenital heart disease—why don’t we have a celebrity leading the fight for better research and delivery of care for adults with CHD?

After watching Kat Edorsson’s moving speech at the Survivor final tribal counsel (which you can watch by clicking here) I thought she would be a great adult CHD spokesperson. I started lobbying her—some may call it stalking, but I’ll stick with lobbying—via twitter and Facebook to seize her reality TV celebrity status and get involved in CHD advocacy. Come on, she was on a show called Survivor, how perfect is that? I’ve yet to get a response from her.

Shaun White is a CHD celebrity favorite of mine—not only because he also has tetralogy of Fallot but because he’s the flipping flying tomato! He swept the Olympics and is a huge inspiration to many CHDers on how to defy the odds and live life to the fullest. I know he could rock the world with his CHD advocacy.

There’s a whole other list of celebrities with CHD including The Office and The Hangover’s Ed Helms, MMA fighter Mark Miller, ESPN commentator and former linebacker Tedy Bruschi, Backstreet Boy Brian Littrell, and singer Jessie J—just to name a few. There’s also many other celebrities who either have a child or family member with CHD.

We need a champion—someone who is willing to devote his or her time and energy to becoming the face of CHD. Obviously, someone who is already in the public eye will bring about greater awareness to those who don’t know CHD in their lives.

We have many AMAZING advocates who are not celebrities to the general public, but definitely celebrities in the CHD community. I love you all, you’re inspiring and fierce!

So, basically, we need to either convince one of these ready-made celebrities to grab the CHD reins and become our spokesperson, or we need to make one of our amazing CHD advocates famous!

Who’s up for the job?

Note from ACHA: We, as well as other CHD organizations, continue to work to identify a spokesperson in an ongoing manner. If you have any resources to share regarding a spokesperson, please let us know. Thanks!

Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at by clicking here.

Location: Blogs Parent Separator ACHA Blog

13 comment(s) so far...


Re: The Face of CHD

We NEEEEED Shaun White! ASAP ! I had no idea! I am going to research more about it now! xoxo Loves to you~~a CHD survivor, and 20wks pregnant with my 1st angel! xoxoxo

By Mary Windt on   6/6/2012 11:26 AM

Re: The Face of CHD

Certainly Shaun White or someone of that type of celebrity status would definitely be able to bring some light to the subject, especially with it being an Olympic year, however someone from "Survivor" would not be the same level-- in my opinion. Many people do not watch the reality shows or at least not anymore-- and not that one. Kind of going out... But I think the "idea" of bringing a celebrity to the forefront of the cause is a very very good one!!!

By Renee Sanders on   6/6/2012 11:57 AM

Re: The Face of CHD

Maybe the CHD can do a campaign I am the Face of CHD. When I tell people I have a CHD the look at me and then say "but you don't look sick!" Unfortunately, most of us don't, but we are out there and are amazing people. Who have overcome great odds just to survive. For me I am the face of CHD because: I ran competitive Track, I worked as a Senior Manager, I am a Mother of 3 which includes 1 set of twins, A Volunteer, and have Tetraology of Fallot. I also know that in my near future I will under go another operation to replace my Pulmonary Valve. As a single person this was scary as a mother it is terrifying!

By Julie O'Neill on   6/6/2012 11:57 AM

Re: The Face of CHD

I wish we had a National Spokesperson for CHD. I was born with Transposition. I do not know anybody else, personally, that has what I have and is having to deal with it on a daily basis. Can you please make a list of celebrities that have CHD? Maybe then I will be able to see that I am not the only one with this. Thanks.

By Chad David on   6/6/2012 12:20 PM

Re: The Face of CHD

Well put, Christy! I didn't know Jessie J had a defect! I saw her perform at Jimmy Kimmel Live. She had a lot of energy!
Thanks for the great blog. Flippin' flying tomato.....HA! Ha!

By Lena on   6/6/2012 12:28 PM

Re: The Face of CHD

I agree with what you are purposing. I didn't realize how many stars have CHD. We definitely need a national spokesperson. Thank you for sharing everything with us.

By Michele Rothman on   6/6/2012 12:50 PM

Re: The Face of CHD

Love this blog, Christy! Congratulations to you in all of your hard work as a pediatric nurse. You are true example of what it means to give back! I vote for finding a celebrity CHD spokesperson too!

By Michelle Marie Perron on   6/6/2012 2:01 PM

Re: The Face of CHD

Hi Christy,
Brian Littrel and Chris O'Donnell just did the new CHD Documetary, "The Heart of the Matter", (we are showing it at our next MLH Sac meeting). If there was a way to get the documentary on prime time T.V. it might inspire more celebrity CHD'ers to step up......Chris O'Donnell has a close friend whose baby was born with a CHD......

I agree that we need a famous face for CHD - I know in the past Shaun White has said he doesn't want to talk about his CHD as a spokesperson.

By Shannon Tucker on   6/7/2012 7:44 AM

Re: The Face of CHD

As I read your post - and the comments - one thing comes through loud and clear to me... that since this is a congenital problem - it is one that we have all dealt with in our past - and don't think is something that we need/want to exploit/highlight/dwell on. By the time we get to be as great as Shaun White is in his field - we have moved beyond being defined by CHD (as so many other bloggers note). With Mr Fox – his illness came about after he had already achieved his life’s work – and it caused him to redefine himself. For most those of us with CHD, that self definition happened during our youth. We also know that we are the lucky ones – those that had great support from families, doctors and those that went before us. While I personally would LOVE Shaun White and others to throw their considerable energy and skills behind our cause – I can understand and respect that they may not want to be the poster person for a widely divergent condition that they do not need to be defined by.

By Karen on   6/12/2012 8:33 AM

Re: The Face of CHD

You could always ask those affected by it to be your spokes people instead of concentrating on one person. Numbers speak volumes.

By Security alarm on   6/12/2012 8:34 AM

Re: The Face of CHD

Hello All,

I am currently a mother myself, and my child Aniyah M. Adams has CHD (Tetralogy of Fallot). My family has been affected by this, currently are still going through a few things. We didn't find out that Aniyah had Tetralogy of Fallot until after she was born. She had the first of her two heart surgeries a month after she was born, and the second at the age of 6 months. I feel that if we can not find a national spokesperson for CHD. I would like to take on the challenge. There definitely needs to be more awareness for CHD, and is hoping that any celebrity would step up to the plate.

By Azzie Carr on   12/12/2012 5:33 PM

Re: The Face of CHD

Mark Miller has spoken often about his CHD. He also recently published a book about his life, but his health is poor now, so I don't think he's up to being a "spokesman", but I have seen Mark Miller do more to bring awareness than any other person.

By Jennifer on   1/21/2015 10:17 PM

Re: The Face of CHD For Karen 6/12/2012

Dear Karen, Respectfully disagree with you that CHD is a Birth Defect that is from your past. When you are born with CHD you are born with a Birth Defect, and you are also born with a form of Heart Disease. I will use myself as an example. I had to deal with it when I had my first OHS in 1964, and when I had the second at age 4 1/2 (I remember it in great detail and spent years not knowing if I would wake up the each morning), I had to deal with it when I was 7 and they considered putting a pacemaker in me. I had to deal with it every time I moved to a new school and they would not let me participate in P.E. without a not from my Doctor, I have always had to take antibiotics when I go to the dentist. I had to deal with it when I was 9 (5 years after my final childhood OHS) and had to have another catherization to follow up on the condition of my heart. I have had to deal with it every year of my life when I go get my Heart Checked, EKG, Echos now and other testing. I had to deal with it when I wanted to have a child and a team of Doctors helped make sure it was safe to carry a child, it was as long as I had my child by age 25. I had to deal with it when I spent 10 years going back and fourth to the doctors having fast heart beats, breathing problems, palpitations and being send home with a heart monitor on only to be told they couldn't find anything until one day they had to take me by ambulance and a doctor finally recognized I was having panic attacks. I had to deal with it when I was 45 and I developed an arithemia, I had to deal with it 3 years ago when they found I have a bicusbid aortic valve. I am dealing now with the fact the my already enlarged heart is now enlarging on the right side. When you have CHD and you have repairs it is not a cure, your heart is forever different from someone born with a healthy heart. Scar tissue, Aortas that are cut through and sewn back together making a patient a higher risk for an Aortic Anuorism, small holes in your heart that develop around a patch. Circulation problems as a heart that started off working too hard starts to pay the price for all that millage. I am 52, I have never worn my CHD on my sleeve. I was born with CHD and most likely I am slowly leaving as I write this due to CHD. Every child born with CHD becomes an adult with CHD. I am blessed, it has been a great life and I wouldn't trade it for anything.

By Debby on   3/31/2015 1:50 AM

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