How active can my child be? Sports participation and congenital heart disease

By: Brian J. Blair, MD, Pediatric Cardiologist

How active can my child be?  This is a common question that I field as a pediatric cardiologist.  It is frightening and daunting to have a child with congenital heart disease.  From the day you come home from the hospital with your baby, it is scary and questions abound.  Is my baby getting appropriate nutrition?  Will he or she gain weight?  Should we be following the usual immunization schedule?  What if my baby gets a cold?  Your mind is swimming in questions, and they usually come to you at inconvenient times.  Wouldn’t it be more convenient if they came to you when you’re in the doctor’s office?  After you make it through infancy and the toddler years, new concerns come up.  Your child gets older and starts school.  You see your child running and playing with other kids and wonder if he or she can keep up.  Is it safe for your child to try to keep up with all these kids with normal hearts?

I see a wide range of heart defects.  Some are mild, some moderate and some severe.  In the severe cases, there is often no doubt that the child will have exercise limitations.  However, kids are resilient and can surprise us and make us eat our words!  The majority of congenital heart defects are in the category of mild to moderate and the kids have normal or near normal exercise capacity.  In cases of significant disease, I try to have the conversation early regarding exercise (or other) limitations.  Sometimes, we even start talking about this prenatally if we have the luxury of a prenatal diagnosis.  I tell these parents that care of the congenital heart disease patient has evolved tremendously. The surgical outcomes are better and better these days.  The quantity and quality of life for patients with congenital heart disease continues to improve.  I tell parents of children with significant defects that “your child may not be on the high school track or basketball team, but I expect he or she to go to school, make friends, play on the playground and generally do the things that you want your kids to be able to do.”  It is important to note that the care of all children with congenital heart disease needs to be individualized.  With a good surgical outcome, even some of the more severely affected children can compete in sports.  Personally, I take care of a boy who is currently in middle school with hypoplastic left heart syndrome.  He plays flag football and his recent results on a treadmill stress test outpace most kids his age with normal hearts.  There are always exceptions to the rule.  Many heart families are aware of Shaun White’s story.  He is a professional snowboarder and was born with tetralogy of Fallot and has been through 3 heart surgeries so far.  He has been able to compete at the highest level in his sport winning championships in major events and gold medals in the Olympics. 

Most children with one functioning ventricle such as those born with hypoplastic left heart syndrome or tricuspid atresia will have a hard time playing on competitive sports teams.  However, you would be surprised what most kids with congenital heart disease can do.  Without hesitation, I tell families that their kids will limit themselves.  Kids will not push themselves beyond a comfortable exercise capacity.  They will rest when their bodies tell them to rest.  It is usually not necessary for a parent to tell their child to sit out or go to the bench if the child appears well while exercising.  We often do need to institute some limitations as kids get older especially letting coaches know what a child’s limitations may be.  Generally, when kids get into middle school sports and certainly high school sports, some limits with the coaches need to be set.  Coaches can and will push kids beyond their exercise capacity, and a child that would have normally rested upon exhaustion could be pushed to a dangerous level.  This is where it is helpful to have the discussion with your cardiologist ahead of time in regards to any limitations.  In my patients who are playing or are interested in sports, I try to have these discussions before their sports season starts.  If the child is of appropriate age and can exercise on a treadmill, it is nice to obtain some objective data on their functional capacity.  Treadmill or exercise stress testing is a great way to test the child’s abilities.  This helps assure all involved in the child’s care that exercise at high levels is safe.  Again, exercise tolerance in congenital heart disease requires an individualized approach.  Even children with the same heart defect cannot be “pigeon-holed” into categories of exercise tolerance.  There are always small variants in original anatomy and certainly variants in surgical outcomes across similar heart defects.  I have listed a link below to a resource that pediatric cardiologists use.  This article lists the most common congenital heart defects and gives a rough outline of recommendations for sports eligibility for each one.  If you have questions about your child’s functional status and exercise capacity, this is a great place to start.  Have the exercise discussion with your cardiologist to determine what the best plan for your child is.  Thanks and keep your heart kids active!

Brian J. Blair, MD

Pediatric Cardiologist

Available online, published by Journal of American College of Cardiology:  “Eligibility and Disqualification Recommendations for Competitive Athletes With Cardiovascular Abnormalities: Task Force 4: Congenital Heart Disease.”  http://www.onlinejacc.org/content/66/21/2372

P.S.  Jimmy Kimmel of “Jimmy Kimmel Live” has a son with tetralogy of Fallot who was born in 2017.  He gave a very heartfelt monologue on his show describing his family’s unexpected experience with congenital heart disease.  He then interviewed Shaun White on his show in 2017.  It is an excellent and inspirational interview.  If you haven’t seen these videos, I encourage you to visit the links below.  Thanks!

Jimmy Kimmel talks about his son’s diagnosis:  https://www.youtube.com/watch?v=MmWWoMcGmo0

Jimmy Kimmel interviews Shaun White:  https://www.youtube.com/watch?v=9ffKBhMacLo

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