Active 8-yr-old son with BAV and aortic root dilation

[TPittman]

My son will turn 8 in a few weeks and has been diagnosed with BAV and aortic root dilation.  He is 50 inches tall and weighs 52 pounds.  He and his father have the bicuspid valve and dilation, and there are no signs of Marfan syndrome.  According to our cardiologist, Tyler's aortic root is 27mm and just over 2 standard deviations larger than normal.  The dilation was diagnosed last year, and we re-checked this year and there was no change.  He has no other symptoms (regurgitation or stenosis).  His blood pressure is good.  He is a very active child who loves sports and has played baseball for the last three years.  His cardiologist said last year and this year that this condition should not affect the way he leads his life.  But then we got a phone call a few days later, and the cardiologist said after consulting the Bethesda Guidelines and his colleagues, our son is restricted to Level IA activities (which includes only golf, billiards, cricket, curling, and riflery).  This is a drastic effect on how he leads his life.  

It is extremely upsetting to us that we will need to tell our son that he will never compete in any other sport (even swimming, table tennis or wakeboarding).  We would like to understand the risks and reasonably be able to apply the known information when we decide what activities are safe for our son.  We realize the obvious risks of impacts (like football) or straining (like weight lifting), but we are having a hard time deciding just how dangerous swimming or baseball, for example, are.  I know I've read other people's questions, and there could be fewer limitations.  Can you give us any indication of what we should consider in making the decision of what activities our son should participate in?  Thank you so much for providing this forum for discussion.

[grendslori]

I would certainly ask your son's cardiologist about the swimming or playing table tennis. Sometimes you are given lists of things they cannot do, but there is no variations on those lists for the individual. Go through that list with his doctor. It is never easy to restrict children with heart disease and I can assure you that doctors do not like restricting children. Believe it or not, your son will find other things to do; sports really aren't everything. My daughter was completely forbidden any sport activity, somehow she managed to learn to ride horses and to show dogs. She is and always has been an avid reader. She would play pool and darts and was very good at slamming me at chess. She was also involved with art. One of the things that you must consider is whether or not your son can be involved with PE classes at school. (Sometimes PE instructors can over push these children). Go back and speak with your child's cardiologist; he really is the best person to ask the why and why not for these types of sports.