Just finished reading your post and thought I would share some of my own experience. I am a 42 year old female who was diagnosed with a bicuspid valve with moderate regurg, trace mitral & tricuspid valve regurg, left ventricle size in the upper limits of normal, and normal ejection fraction...10 years ago by accident. A co-worker picked up a slight murmur and suggested an echo just to check what was going on. I had had no symptoms at all. Things pretty much remained the same until December 07...when I was diagnosed with a ascending aortic aneurysm of 4.7cm.....5.0cm being the indicator for repair when a bicuspid valve is present. Was evaluated in NYC by well known specialist in 2/08 and no surgery yet. I am being followed very closely every 3 months with an echo and I'm hoping to get another 10 years out of the situation. I have NO physical restrictions I continue to run 3-5 miles daily go to the gym regularly. Correction there is one restriction I was advised to not start a career in power lifting.....and that I can live with. I was advised to have family screened since they do see it run in families. Although there is no family history for me.
Just get as many opinions as you need to feel comfortable....
The area of interest is the biscupid valve (aortic valve), and that is the valve that opens and passes blood/oxygen from the left ventricle onto the aorta vessel each time the heart pumps...no significant stenosis indicates the valve opening is normal and doesn't restrict blood flow.
After the pumping activity the leaflets close over the opening sealing the orifice and preventing any blood from back flowing (regurgitation) into the left ventricle. Sclerosis (hardening, abnormal formation) of the leaflet prevents the leaflet from closing the orifice effectivily and there is moderate regurgitation (back flow).
It is not unusual to have some mild back flow, but moderate to severe is considered serious...mild to moderate may not present any symptoms. If serious there could be shortness of breath, chest pain, muscle fatique, etc. as there is a deficit of blood pumped into circulation with each heartbeat.
Well, I can't answer all your questions because I don't know too much about a BAV, but I was recently diagnosed with one as well. No significant stenosis is definitely a good thing. I think the sclerosis would mean the valve isn't moving as freely as it should/could, but it sounds like it's not too bad yet, same with the regurgitation. I was told that it it a very real possibility that I'll need mine replaced in my lifetime. The good news is that was found while I'm still pretty young (just turned 28) and that means I can start being "heart healthy" much earlier. The plan is to keep my heart as healthy as possible for as long as possible to delay the surgery for as long as possible, we are hoping to delay it for 30+ years. I don't know how old your husband is, but I would assume the plan would probably be the same for him. They'll probably want to do routine echos to keep an eye on it, I was told every 2 years probably.
As for the kids.. I also have two little ones (age 6 & 4) so I was obviously concerned with them as well. My sons Ped told me unless or until he started to show symptoms that there was something wrong with his heart, that he's not concerned and wouldn't recommend looking into it further. (I have a bicuspid aortic valve, PFO and atrial septal aneurysm.) He listened to my sons heart and said it sounds perfectly normal. So that would be my advice, mention it to either your husbands cardiologist, or ask your kids Ped about it and get their advice. Good luck!! I know how overwhelming it can seem in the beginning, but like you said, knowledge is power!! I feel MUCH better knowing all about my issues and I'm definitely not afraid to sit and ask my cardiologist even the most mundane things! lol That's what they are there for! ~Beck