12 yr old with aortic regurgitation/biscuspid aortic valve

[francie12]

Very grateful for your time and for helping so many people. My son was just diagnosed with a bicuspid aortic valve. He has moderate aortic insufficiency with left ventricular dimensions at the upper limits of normal.  EEG shows a sinus rhythm with voltage criteria for left ventricle hypertrophy. No aortic stenosis.  Echo is scheduled for 6 mons to see how it's progressing.  My question:  How many children with this type of picture go on to needing surgery in childhood, young      hood,      hood?  We are very concerned and trying to understand our situation, short and long term, as best we can. Again, thank you.

[CCF-M.D.-MJM]

Hi Francie12,

I am sorry to hear about your son’s aortic insufficiency.

The decision to go to surgery to replace a leaking bicuspid aortic valve is based on symptoms and/or structural changes in the heart.  There are absolute dimensions that if the left ventricle is bigger than XX in systole or YY in diastole, then surgery is necessary.  If he is having symptoms of heart failure, then surgery is necessary soon than later.  If neither of these two applies, then it depends on the rate of change.  It is possible your son has had this for 12 years and his enlarged heart has progressed slowly over 12 years.  It is also possible that the leaking aortic valve is only months to years old and surgery is necessary in the next few years.  It depends on the rate of change in left ventricular dimensions over time.  Faster progression will mean surgery soon than later.


How many children with this type of picture go on to needing surgery in childhood, young hood, hood?

Now I will answer your question directly.  It is too early to tell when he will need surgery.  The next echo should help clarify the rate of progression.  This is the most important determinant in your situation.

Young people tolerate cardiothoracic surgery very well and have a very low rate of complications.  As a parent, however, I know this does little to comfort you.  

Remember that the structural changes from aortic insufficiency are reversible unless allowed to progress too long.  Make sure you are diligent about his follow up care and don't be afraid to seek a second opinion.

When he needs surgery, make sure it is done by a high volume center and by an experienced surgeon.

Good luck and thanks for your post!

[Rev1208]

I'm sorry to hear about your son.  I am a 25 year old with the same situation.  I was 22 when I was diagnosed with my bicuspid aortic valve as well as the regurgitation.  I get echo's every 6 months to a year and have pretty much not progressed.  I still workout with weights even though it is said to be "forbidden"  I have noticed that I get a few more PVC's here and there but that is about it.  i make sure sure my diet stays relitvely healthy and I supplement with  vitamins.
2000 mg Vitamin C
500 mg Magnesium
a Centrum Multi
120 mg co enzyme Q-10 (which I think is the most important)
I also take a low dosage high blood pressure med. I am not really sure at what rate a teenager would progress, but I would say keep him active, i.e. cardiovascular activites and moniter his diet.  Low sodium, fat, and cholstrol.  No matter what even if that valve needs to be replaced in the future you want him to have a healthy heart.  Best of Luck.