What the Winter Olympics and congenital heart disease have in common

If you have been watching the PyeongChang 2018 Winter Olympics, there is a good chance you have heard snowboarder Shaun White’s name. But you might not know that the three-time Olympic gold medalist was born with a rare heart condition comprised of four congenital heart defects.

The 2018 Olympic Games coincide with Heart Month, a period when national efforts are underway to raise awareness of heart disease. Seth Hollander, MD, a pediatric cardiologist at Lucile Packard Children’s Hospital Stanford, recently spoke with KTVU’s (Fox 2) Cristina Rendon about White’s condition, called tetralogy of Fallot (ToF), which affects nearly 5 of every 10,000 children born.

Hollander explained that the primary dysfunction associated with ToF is that the pulmonary valve, which connects the right side of the heart to the lungs, is too small, making it difficult for blood to move from the heart to the lungs. In addition, patients with ToF have a hole between their left and right ventricles (the two main pumping chambers of the heart), which can cause blood to flow in the wrong direction, away from the lungs.

Nearly all patients with ToF require surgery in infancy, most commonly between three and four months of age. When White, who is now 31 years old, was born, his condition was repaired in a multistage procedure that required three open-heart surgeries. Health care has since evolved, and today the condition is typically repaired with only one surgery.

In the future, Hollander said his hope is to be able to treat ToF with even less impact to patients. “We are always trying to minimize the amount of surgeries patients have and move more in the direction of non-invasive procedures,” he said. Such procedures would involve inserting a small catheter through the patient’s neck or groin rather than opening the chest. This approach is currently used for valve replacements and other heart procedures in adults and children, “and the technology is getting better every day,” Hollander said.

Shaun White has inspired the world by making history as a snowboarder. But for fellow congenital heart patients, the impact he has made is even more special. Among many others, White has been a source of inspiration for Jimmy Kimmel, whose son was born with a severe form of ToF last year. Kimmel interviewed White in May 2017 about the effect the condition has had on his career.

“It’s astounding because congenital heart disease is relatively common and there are many treatments for it,” Hollander told KTVU. “And with the right treatment, many patients can go on to live ordinary — or, in Shaun White’s case, extraordinary — lives.”

At the Betty Irene Moore Children’s Heart Center, patients, doctors and nurses alike are inspired by White’s success. “We are really delighted that we can see a congenital heart disease patient not only surviving but really thriving and performing to the best of his ability,” Hollander said. “It’s very nice to see; it’s very gratifying.”