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

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.

[MomofLenny]

I would like to tell you my story because maybe a part of it will help you:

I have a 15 year old son that was in the same exact position at the age of 13.  My son was diagnosed in May 2008 with a BAV and dilated aorta.  He is negative for genetic disorders. The ascending aorta was 3.1 and the aortic root was 2.6.  He went from playing just about every sport except soccer to none.  (Competitive baseball and wrestling were his most liked) He was 5'4" and 101 lbs.  He did have a very hard time with not being involved in what he loved so so much.  I completely understand how hard it is for you to restrict your son, it is a very hard decision.  My husband and I had an especially hard time because we knew that our son as a freshman in high school would have been on the Varsity baseball team.

Freshman year - being a teenager with a recently diagnosed heart condition and first year in high school was very difficult for him emotionally.  He did start to see a physcologist every two weeks because he had a lot of anger and confusion.  This was the best thing that we could have done for him, he now has accepted and understands more of what is going on.

Fast forward to this year - our son was allowed to snow board this winter due to the fact that that from the 2/09 to 8/09 checkup there was no change in the dilation. Up until 2/09 there was some dilation.  Snowboarding is also a passion of his.  The doctor is working with us and giving alittle in what he can do.  

We went for a 6 month checkup 2/15/10  - He now is 5'11" and 145 lbs. and is not done growing. We met with the Doctor and in a group discussion decided if the dilation was unchanged we would put baseball at the HS level back on the table.  Well then our son had the Echo - The ascending aorta dilated from 3.7 (Z score +4.48) in 8/09 to 4.0 (Z score +5.54) and the aortic root from 3.2 to 3.8.  So we (my husband and I) left the baseball decision up to our son.  He had his choice of us deciding for him or him deciding for himself.  He chose on his own that it was just not worth the risk and that since he hasn't played he hasn't missed it as much as he thought he would.  I think it also helped him in knowing that it was his choice and he wasn't being told he couldn't do it.  Now since the aorta has dilated considerbly since first being diagnosed the dr is looking into putting him on Losartan.  And then we wait another six months.

We where also told that if the aorta dilated to 4.5 he want us to meet with a surgeon. We do realize that as he still grows the aorta will also continue to grow, we can only hope that we don't reach that 4.5 till after he finishes growing.

I hope this helped you in some way.
Sue