Fifteen-year-old Will Van Dyke is a typical teen. He enjoys spending time with his friends and family, singing in the school choir and honing his acting skills on stage. But, if you look behind the scenes, you’ll find something extraordinary: Will was born with hypoplastic left heart syndrome, a congenital condition that caused the left side of his heart to form incorrectly.
Since undergoing the first of three open-heart surgeries at just 4 days old, Will has persevered through multiple hospital visits, catheterizations, a stroke and now, a daily regimen of necessary medications.
“It’s been a long journey to get to this point. Will has always traveled it with a smile, but it hasn’t been without its challenges,” says his mother, Lori Van Dyke.
One of these challenges is physical activity.
“Strenuous activity and contact sports haven’t always been top of mind for Will due to bouts of oxygen deprivation and the fact that he has had so many surgeries,” Lori explains. “We live in an active community, his siblings play sports, as do his friends. Will just never developed a fitness routine suitable for his condition.” Because of this, not only has Will missed out on the benefits of physical activity, but the social component of team sports as well. Something he really loves, says Lori.
According to Jennifer Huang, M.D., physical and social aspects of activity don’t need to take a back seat to congenital heart disease.
“For many people living with such conditions, the natural reaction is to limit, or even avoid, physical activity under the assumption that a fragile heart may not be able to support additional strain,” says Huang, assistant professor of pediatrics (cardiology) at OHSU Doernbecher Children’s Hospital, OHSU School of Medicine, in Portland, Oregon “In reality, consistent exercise habits are ideal for heart health and may help to extend one’s life.”
To help prove this case to their patients, Huang and physician assistant Alissa Lyman, P.A.-C. collaborated with the OHSU physical therapy team to start OHSU Doernbecher’s first Pediatric Cardiac Rehab Clinic.
Will was the first patient to enroll.
After he completed a cardiopulmonary exercise test, a strenuous activity performed while connected to a series of monitors that assess the heart’s maximum capacity, physical therapist Sarah Staropoli, P.T., D.P.T., used the results to develop a safe exercise plan personalized to Will’s heart.
“The goal is to instill confidence, as well as an interest in physical activity. We want to focus on what these kids can do, versus what they can’t,” says Staropoli.
In Will’s case, the approach worked.
For 12 weeks, he jumped, lifted and stepped his way to a healthier lifestyle, one he knows his heart can handle.
“After only a few therapy sessions, Will started asking for harder, more strenuous tasks,” says Lyman. “His strength and confidence were apparent. It was amazing to watch.”
Nearly five months after completing the program, Will is still at it. He participates in a fitness boot camp after school and is able to keep up with his friends as well as school physical education classes. He also sports a slimmer and healthier physique.
“Before joining the program, Will couldn’t touch his toes. Now, he’s not only lifting kettle balls on a regular basis, but he’s learned to embrace himself and his body,” Lori says. “It has been a life-changing experience. Our family is so proud to know that Will’s health now matches his vibrant personality.”