My son is 11 weeks today.he has a BAV. The cardiologist echoed him and they said that two of the leaflets in his aortic valve are fused but that he has three leaftets. There are no other problems with the heart. The stenosis at the moment is moderate but if it was to deteriorate they would go in using balloon valvuplasty and open the fused leaftlets. The cardiogist said that they would be hopeful that the would be all he would need till he is in his 50's when he may need to than have his valve replaced.
I am just looking for some reassurance on this news cause having read some of the forums I wouldnt be as hopeful. what is the general prognosis for cases like these ?
Bicuspid aortic valve is the most common congenital heart defect, occurring in 0.5-2% of the general population, so it’s rather common. Most of these patients remain asymptomatic, and many don’t even know that they have a bicuspid aortic valve (BAV). But, these valves can be complicated by aortic valve stenosis (obstruction), insufficiency (leakage), and prolapse as well as dilation of the aortic root. When you throw aortic valve stenosis into the mix, it does change things somewhat. I typically tell my patients that aortic valve disease is something that will require care for life. That doesn’t necessarily mean that it will require frequent interventions, however. The goal is to have the minimum amount of obstruction as well as the minimum amount of insufficiency at the valve. Balloon valvuloplasty is a common method that is used to reduce the amount of valvular stenosis without having to do surgery. It is relatively imprecise, but can get a reasonable reduction in the stenosis. It creates a tear in the valve leaflets in the process. It can also create insufficiency in the process. It is important to understand that the valve will NEVER be made perfect. And, it does depend on the experience and skill of the interventional cardiologist as to how to balance the amount of reduction of stenosis with how much insufficiency is created.
I certainly can’t promise you that your son won’t need sooner catheter or surgical intervention than what you’ve been told. And, of course, every patient is different and has different circumstances associated with the valve, etc. However, with appropriate intervention as well as follow-up care, the hope is that surgery can be delayed for a long time, if not prevented. In the meantime, barring any other problems, he should have a reasonable and relatively normal lifestyle. He will likely be prevented from participating in major isometric activities, such as heavy weightlifting, football, and wrestling, but should be able to go to school, run on the playground, and probably even participate in regular aerobic activities, such as track or soccer. Finally, BAV and aortic stenosis can run in families; thus, the risk of congenital heart defects, especially on the left side of the heart, will be higher than the baseline 0.8% for his children. As a male with a congenital heart defect, I would quote a risk of at least 5-8% of congenital heart defects in his children.
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