Published March 1, 2023
Shaun White is a household name and an inspiration to many throughout the world, including – and perhaps especially – the one in 100 children born with congenital heart disease each year.
The five-time Olympian and Olympic gold medalist in half-pipe snowboarding was a guest at the Children’s HeartLink Global Gathering in 2022. White shared his story of having the heart condition Tetralogy of Fallot (TOF), which required two open-heart surgeries before the age of one.
“It [congenital heart disease] was a big part of my life when I was a lot younger,” White said. “I was told I couldn’t do certain things, but honestly my parents let me find my own boundaries, and of course, I just wanted to fly. I wanted to be in the air.”
White has lived his whole life with congenital heart disease, and now uses his platform to spread awareness.
Watch White’s interview at the 2022 Children’s HeartLink Global Gathering:
What heart condition does Shaun White have?
White has Tetralogy of Fallot (TOF), a complex type of congenital heart disease (CHD) that is present at birth. The heart structure of children born with TOF restricts blood flow from the heart to other parts of the body, commonly causing their skin to turn blue, indicating that not enough oxygen is being carried through the blood.
This happened to White when he was a baby. He was rushed to the emergency room and diagnosed.
While there is no cure for CHD, those with access to heart care can have operations to repair their heart and allow them to live a long life and thrive. White received immediate care for his heart condition and went on to live an active and energetic childhood. He said finding the sports of skateboarding and snowboarding gave him the outlet he needed.
“Something about having this experience at a young age really put a fight in me,” he said. “I was always driven. Through snowboarding and these sports, I actually got to excel and focus all that energy.”
Heart conditions can be repaired or fixed but those living with congenital heart disease require lifelong care. For White, heart monitoring for his condition has been a part of his life since he was young. He still undergoes regular testing to care for his heart and one day will need a valve replacement.
Shaun White: Heart condition, the Olympics & telling his story
White’s first Olympic games were in Torino in 2006. He was 19 years old and hid the fact that he had a heart condition. He didn’t want his heart defect, overcoming the odds and open-heart surgery to overshadow his first Olympic games. He wanted to share his story on his own terms.
He returned to the Olympics in Vancouver in 2010. He once again won gold in the snowboard halfpipe event and decided it was time to talk about his congenital heart disease.
“It was really incredible for me to experience that and to have that as part of my life and to share that story,” White said.
White shared that people reach out to him via social media and mail letters to share their own stories about facing a CHD diagnosis, either for themselves or their child. They talk about how White has helped them gain confidence in going into open-heart surgery and a lifetime of monitoring and treatment for their own heart condition.
While White retired from snowboarding in 2022, he has turned his attention to Whitespace, his snowboarding and lifestyle brand, and toward sharing his story to make a difference in the world.
White is a proud member of the zipper club. He’s honored to share his story with others, like at the Children’s HeartLink event in 2022. It’s a way to give back that can give children around the world access to care like he received. See how you can join White in supporting Children’s HeartLink.
Congenital Heart Disease: How Children’s HeartLink expands access to heart care
One in every 100 children is born with CHD, which equates to about 1.3 million children born around the world each year. It is the most common birth defect and the birth defect that causes the most infant deaths. But with access to screening and treatment, a child born with CHD can thrive and live a long life.
In most underserved regions of the world, however, parents have nowhere to turn for appropriate medical care when their child is born with CHD. In fact, only one in 10 of children born with CHD has access to care. Children’s HeartLink is working to change that.
We use a capacity-building model built on medical volunteers training doctors, nurses and health care professionals in hospitals in low- and middle-income countries to build, improve and maintain their own pediatric cardiac care programs.
These partner hospitals work towards becoming Children’s HeartLink Centers of Excellence by developing their skills, gaining expertise to treat even the most complex cases, improving patient outcomes and treating more children who have CHD.
Once a partner hospital becomes a Children’s HeartLink Center of Excellence, doctors and nurses are then qualified to train their peers in underserved communities and advocate for heart care locally and globally. More Children’s HeartLink Centers of Excellence ultimately leads to more children having access to heart screenings and lifesaving care.
We thank White for sharing his story with us and using his platform to bring awareness to the need for expanding heart care access to the millions of children around the world born without the access to care he had.
We want as many children as possible with CHD to receive care. Here are three ways to get involved with Children’s HeartLink’s: