restrictions for 11 year old with bicuspid aortic valve with aortic root dilation

[maria42323]

Hi,  I have an 11 year old son that has a BAV with moderate aortic root dilation.  No stenosis evident at this time.  Recently had an echocardiogram.  At this point our son was told he could carry on with his regular activities and house league hockey, skiing, skateboarding, snowboarding and basketball.  We asked the cardiologist if our son could play contact, competitive hockey in the summer.  It was strongly recommended he not play any competitive, contact sports.  My concern is should he play hockey at all at this point.  We were told that he should not lift any weights, which I understand.  I read as well he should avoid doing push ups, chin ups and pull ups.  What if we have a car accident, would the airbag or seat belt pose a risk to his chest?  Should he be on a cardiac diet?  His weight is healthy for his age.  My husband and I are having a difficult time with the restrictions yet don't understand why his conditions must be severe before he is considered for a valve replacement.  Please help us understand.
thanks

[kenkeith]

From what I have read BAC is a tissue disease and that condition is more vulnerable for a rupture or dissection as vessels are less elastic and are unable to accommodate the strain as readily. Heavy lifting, etc. quickly spikes blood pressure, and I understand where you are going with contact sports and chest injury with a car accident.    

An impact to the chest can damage the vulnerable aorta and therefore contact sports should be avoided according to the medical community.  A BAC without a dilated aorta may be given different consideration.

Treating BAC and due to a variability of progression the recommended protocol is regular checkups,  certain tests (electrocardiograms, echocardiograms, and stress tests) to monitor any progression of a bicuspid aortic valve. No other treatment is necessary for a bicuspid aortic valve unless symptoms occur.

When the aorta root has enlarged (>5.0cm, less with BAC), the surgeon will try and save the aorta valve.  I don't believe the procedure to replace an aortic vlave would be appropriate without waiting for the root to increase in size as it is almost always progressive.

[skydnsr]

PS, I don't personally see any reason why he should be on a "cardiac diet," since his heart problem is not diet-induced.  It is congenital and did not arise from any lifestyle issues.  BAV is completely different from CAD (coronary artery disease).  CAD can be, to some degree, induced or exacerbated by lifestyle factors -- but BAV isn't, especially not in an 11 year-old.  Your son hasn't even been alive long enough to have the kind of lifestyle-related degenerative damage that causes CAD.  

All kids should eat a healthy diet, on general principals.  So yes, your son should eat his fruits, veggies, and whole grains, and he should not live on junk food, but that is true for him to no greater or lesser degree than for other children.  

[skydnsr]

If they put a new valve in him now, he will outgrow it fairly soon.  That is one reason why the doctors want to postpone the surgery.  The closer he is to his full adult size at the time of his VR surgery, the longer he can potentially keep the new valve in him, before he needs his next surgery.  You don't want him to have to have open-heart surgery every couple of years from now until he is 20, if you can help it.  The doctors are trying to manage the situation without surgery for as long as they reasonably can, both because he is growing and because there is a small but real risk of death in VR surgery.  You don't want to put your son at that kind of risk until you have no other choice.  Better to try to conserve his heart function by nonsurgical means, for as long as possible.  The surgery that he will need is just not a trivial thing.

As far as being in a car wreck, it is hard to say what the air bag or seat belt could do to his heart, but I have been driving for 40 years and have had very few accidents and have never experienced an airbag deployment.  I've probably driven/ridden in cars close to a million miles by now.  In the two accidents in which I was thrown forward against the shoulder harness, there was absolutely no bruising to my chest.  So, although I am no kind of accident expert, I would say that the chances of your son's having a devastating thoracic injury in a car wreck within the next few years seem extremely minimal.  And it is hard to avoid riding in cars in our society, much harder than avoiding playing contact sports.

I'm sorry for the situation.  I'm sure that it is difficult.  I got diagnosed as an adult with the same condition as your son, and it was hard enough for me.  I don't even know how the parents of the congenital heart kids do what they do.  You have my respect and admiration.