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Olympic snowboarder Shaun White is Robyn Sherman’s role model. Not only because he’s the best snowboarder in the world, but because they share a common bond—both Shaun, 24, and Robyn, 18, were born with the congenital heart disease tetralogy of fallot (TOF). Both Shaun and Robyn underwent open-heart surgery before they were even a year old (Shaun actually had two surgeries.)
According to the American Heart Association, tetralogy of fallot—the most common heart defect in children, affecting 400 out of every one million children—is a combination of abnormalities of the heart that can include a hole between the ventricles and obstruction of blood flow from the right ventricle to the lungs. It can also include issues involving the aorta and having the right ventricle develop into a thickened muscle. If treated early, the general outlook is good.
Fortunately, for Robyn’s parents Karen and Scott, the doctors knew of their daughter’s heart defect the day after Robyn’s birth—sparing her parents the terrifying ordeal of discovering the diagnosis at home, on their own (many babies with TOF are diagnosed after turning blue, having trouble breathing, becoming increasingly irritable, or even fainting after crying or eating).
According to Robyn, “There were no indications that there were any issues with my heart during the pregnancy—my mom was one of those prenatal perfectionists—and when I was born everyone thought everything was perfect.”
A few hours later, the hospital staff heard something funny in Robyn’s chest—something that sounded like the flow of too much liquid running through a narrow hose. After some routine tests, she was diagnosed with TOF.
Scott remembers thinking, “This is not supposed to happen to your kid.”
The first year of Robyn’s life was a challenge for the Sherman family. She needed constant attention, she had to eat and sleep every hour, and trips to the hospital became routine. She had two catheterizations and an angioplasty before she was nine months old, and her first open-heart procedure at nine months. When she was 11, she had catheterization and angioplasty procedures, in addition to a pulmonary stent put in her heart.
A year later she had another open-heart surgery, resulting in a Medtronic Mosaic heart valve. “My heart had a tough few days, and there was some discussion of how to treat my abnormal heart rhythm—so they hooked me up, temporarily, to a Medtronic external pacer and discussed a permanent implant. Thankfully normal rhythm returned and there was no need,” Robyn says.
Robyn continued to live her life and do what children her age did. She went to school, read, spent time with friends, and participated in gym class. She worked hard to make sure her heart condition didn’t define who she was.
And after everything she’s been through, she realizes the importance of supporting the American Heart Association’s mission to eradicate cardiovascular disease. She has been volunteering with the American Heart Association and participating in the annual Start! Heart Walk since she was a little girl, and she’ll be speaking at the annual Heart & Stroke Gala on October 16 about the importance of funding research. Her motive is simple. “I don’t want other children to go through the same thing.”