I have BAV. What did you tell your child's pediatrician?

[AmyBL]

Hi folks,
My twin sons have their yearly well-visit with the pediatrician this week. During the past year, I was diagnosed with BAV and know that my children are at an increased risk of having the same condition. I have not been told of any heart murmurs for the boys. How did the other parents out there deal with this type of situation? We had a neighbor and her son was diagnosed with BAV at a very young age. He has had physical restrictions since he was small. It almost seems like it might be easier for the boys not to be burdened with this news (if either of them did have BAV) given that the risks associated with the condition often don't occur until later in life (like me now.) There are so many wise opionions on this board, I am curious how you folks deal/dealt with this issue.

 

[Fundy]

Well if your children are young, they wouldn't have to know. But given that being a first degree relative of someone with BAV carries higher risks for certain health conditions, it would be useful to their doctor to know.

There is some evidence I believe that even first degree relatives of someone with BAV that don't have BAV themselves are also at a higher risk for aortic anneurysm. Maybe other anneurysms as well. Myself, I had a hernia rupture repaired at age 2.

Its probably better for the doctor to know. Whether the children know or not probably isn't that useful.

 

[Bill B]

I agree with Fundy. Our kids, although much older than yours when I found out I had BAV, had echos done. Also, know that although I had BAV since birth but unrecognized until I was 60, it did not impair me in the slightest. I was quite a fast tack and marathon runner into my late 30s and was never symptomatic. This is quite common with BAV. Until the valve starts to calcify and stenose, which would present as a murmur on physical exam, or dilation of the aorta is detected, all of which is completely unpredictable in terms of time to onset, there is no reason to restrict activity.

 

[yotphix]

My wife is expecting our first now, and you can be certain that we'll have an echo whenever the docs think it's appropriate. We'll also be particularly attentive to preventing oral and dermal infections. (Everyone should be, but we, especially NEED to be.) I wonder did anyone convince their parents to go in for an echo after finding their own BAV or dissecting aorta? I have an aunt who also has 'aura' and afib (same as me) and I'd like her to get looked at.

 

[ElectLive]

I agree with the posts above. Heart murmurs are often missed, so that is not the answer, the only way to diagnose and monitor (if need be) is with echo. Both of my young girls had this done, very soon after my surgery, and fortunately neither has BAV. If they had, I probably wouldn't have told them initially, but certainly when they were a little older (only 1 1/2 and 4 now). Maybe not all, but the vast majority of physical activities for kids should be unrestricted, assuming everything continues to check out well over time.

I was diagnosed at birth and was aware of it for as far back as I am able to remember. I did most everything the other kids were doing and was never burdened. Growing up with a disease actually makes it much easier, I think, it's a part of you always, so you never question it and never have to go through a dramatic stage of shock and acceptance later in life. I'm diabetic also, and even at age 7, it never was that big a deal for me either.

Best wishes to you and your sons and here's hoping that learning more will only bring good news. By the way, I started a thread a while back about the issues of BAV and first degree relatives, most of which has already been mentioned, but if you're interested in reading a little more, here it is: http://www.valvereplacement.org/forums/showthread.php?39706-BAV-and-First-Degree-Relatives&highlight=.

 

[ElectLive]

My wife is expecting our first now, and you can be certain that we'll have an echo whenever the docs think it's appropriate. We'll also be particularly attentive to preventing oral and dermal infections. (Everyone should be, but we, especially NEED to be.) I wonder did anyone convince their parents to go in for an echo after finding their own BAV or dissecting aorta? I have an aunt who also has 'aura' and afib (same as me) and I'd like her to get looked at.

You know, all kids are different, but my 6 month old was actually slightly easier to echo than my 3 year old. Both did very well, though, given that staying still is not something young kids are skilled at. It took a while, but I convinced my parents and siblings to have it done. I was worried it might be an insurance issue (not necessary), but that turned out to be no problem at all.

 

[AmyBL]

Thank you, all. I know I will tell the physician about my condition so the twins (and my older Son) can be thoroughly checked. My only hesitation is that one of the twins had asthma when he was younger and he developed a great deal of fear of physicians and procedures. My plan is to tell the physician about my condition before he sees the boys. If they have to have echos . . . we will just have to reassure Danny and pray he doesn't have the condition. Thanks again.

 

[Glen Swan]

My son was diagnosed at 10 days old and had his operation shortly after to address a narrowing of his aorta (CoA). His BAV is not a problem right now, but we are watching it as everyone else. Since then, echo's have been pretty easy on him thus far, but of course that may change as he gets older and more aware of what's going on around him. I think trying to hide it from him would be a mistake for my son, just because eventually he has to find out one way or another. This isn't something that will just go away with age. It's something he will have to learn to take care of as he grows in life. The last thing we want is for him to not take it serious or become too scared to visit the docs for his annual checkup. Thus, we are taking the approach of growing him into accepting BAV as any other type of normal condition that can have serious consequences if he doesn't take good care of himself, but the reward is that him knowing it's highly treatable, little restrictions and can go on living a normal and healthy life just like anyone else. On top of that, if he grows into accepting the condition and becoming more aware of what it means to his body, we feel he will have a higher acceptance rate if some serious should come along with his BAV. That way he completely understands his options and wants to take a good option for himself in case we are not around. Otherwise, he could be here on the forums, 30 years later asking what BAV is and if he needs to take action.