What does it mean to be born with a ‘special heart’?  

By Tiffany Lund 

 

​Willow Stennett is an energetic, fun-loving Kodiak third grader. When she’s not in school, she loves to dance, play with her cats Chloe and Newt, and explore the nearby natural beauty with her family by hiking, tide pooling, fishing and picking berries. In many ways, Willow is a normal Alaskan 9-year-old. In one significant way, however, Willow is unique: she has a special heart.  

 

When Willow was born, it was quickly discovered that she had a ventricular septal defect (VSD) and an atrial septal defect (ASD). These congenital heart defects (CHDs) meant that Willow had two holes in her heart. According to the American Heart Association, CHDs affect roughly one percent of births in the U.S. each year, or about 40,000 babies. Among all CHDs, VSD and ASD are more common and can appear in anyone. For most children the cause of their VSD or ASD is unknown, and the level of medical intervention required varies greatly from case to case.   

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For Willow, when she was 4 months old, she got open heart surgery to fix the holes in her heart. After the surgery and into her infancy she experienced congestive heart failure, which impacted blood flow in her heart and required frequent hospital visits for treatment. 

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Fast-forward to today and Willow is leading an active, healthy life. She still has regular check-ups with her doctor and needs to keep careful tabs on her body but can do nearly any activity she wants – from aerial silks to acro dance. Willow decided to share her heart journey with other students in Kodiak and across the state by serving as an Alaska Youth Heart Ambassador throughout the 2024-25 school year. The American Heart Association created the ambassador program to give young people a voice to encourage, advocate and emphasize the need to rase critical funding, while also sharing the impact of cardiovascular disease on their own life. 

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“When you have problems in your heart, sometimes it is not easy for other people to understand,” says Willow. “I am healthy now and have a lot of energy, so people are surprised when they see my heart scar, g-tube and continuous glucose monitor. They think I'm just a normal healthy kid, but it's a lot of work to keep my heart and body healthy and strong. As a heart ambassador, I can talk about my heart and help people understand it better.” 

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In January of 2025, Willow shared her story at school assemblies in Kodiak as part of her role as an ambassador. She was recognized as a “Heart Hero” for all she’s endured and for choosing to help others better understand special hearts like hers.  

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Learn more about CHDs at heart.org/CHD. More information about the Youth Heart Ambassador program at heart.org/youthambassador.  

 

Tiffany Lund is the school engagement director for the American Heart Association in Alaska. If you’re an educator or parent interested in bringing an in-school program to your students, reach out to Tiffany at tiffany.lund@heart.org.