newborn baby with bicuspic aortic valve

[barishan]

hi this is barishan
I have a newborn baby,he is now 15 days.after birth B.A.V and middle aortic stenosis was diognosed.we began regular visits to pediatric cardiologist now.I would like to ask eveybody with this diagnosis;
-at what age did you go under a repair or replacement
-what kind of problems you faced in your childhood
-did it stop you to make some exercises or any kind of sport or basicly to play with the other children?
-is it possible for anybody with B.A.V to live a fully normal life without any operation?
I would very much appreciate if you could share your experience.

 

[Curtsmum]

Sorry i can't be of any help, just wanted to say hi and welcome. Hope someone can help answer your questions, all the best.

 

[Mary]

Hi, Barishan.

I have a newborn grandson who was born with a bicuspid aortic valve ten days ago, and he will be seen by a pediatric cardiologist who hopefully will give us some answers to questions we have.
How did they determine the level of aortic stenosis involved in your son's situation?
I had my bicuspid aortic valve replaced as an adult so it did not influence my childhood at all.
I wish I knew more to tell you, but for now, I don't.

 

[netmiff]

I had a bicuspid aortic valve, was not aware it was bicuspid until surgeon replaced it with a mechanical one, at age 53, so no, I was not aware of it growing up, and did all things normally.

 

[zipper2]

Barishan,glad you found us sorry for reason

can't answer your question just want to say hi and welcome here.

zipper2 (DEB)

 

[Andrew'sMom]

Hi Barishan.
Welcome aboard. I have 4 sons, 2 were diagnosed as infants with BAV. One (age 6) is very stable with no problems, the other (age 8) has mild stenosis of his valve and moderation dilation of the ascending aorta, a condition that commonly goes along with BAV. He will likely begin taking medication in the near future to help control the dilation. Andrew has had a very normal childhood; he participates in swimming, soccer, tennis and baseball along with running around with his brothers & friends, riding bikes, playing etc! While he is allowed to participate in these recreational sports, he cannot do things like weight lifting, strength training etc that are involved with competitive sports, including high school sports. His cardiologist has told us to make strong attempts to steer him towards golf. He sees his cardiologist once a year for now for an exam, ekg and echo. Repair/replacement will be at some point down the road when the valve no longer functions well, and the doctors say there is no way to predict exactly when that will be, they gave us an estimate a few years ago of 10 years, but said it could be 5 or 15, it just depends on how the disease progresses.
I hope this was helpful. Stick around on this web site, this has been my saving grace! The people and information here are wonderful.
Jen

 

[WayneGM]

I don't have answers to your questions, but I just wanted to wlecome you to VR. Glad you found us. There's lots of different experiences and insights here.

 

[Mary]

Hi Barishan.
Welcome aboard. I have 4 sons, 2 were diagnosed as infants with BAV. One (age 6) is very stable with no problems, the other (age 8) has mild stenosis of his valve and moderation dilation of the ascending aorta, a condition that commonly goes along with BAV. He will likely begin taking medication in the near future to help control the dilation. Andrew has had a very normal childhood; he participates in swimming, soccer, tennis and baseball along with running around with his brothers & friends, riding bikes, playing etc! While he is allowed to participate in these recreational sports, he cannot do things like weight lifting, strength training etc that are involved with competitive sports, including high school sports. His cardiologist has told us to make strong attempts to steer him towards golf. He sees his cardiologist once a year for now for an exam, ekg and echo. Repair/replacement will be at some point down the road when the valve no longer functions well, and the doctors say there is no way to predict exactly when that will be, they gave us an estimate a few years ago of 10 years, but said it could be 5 or 15, it just depends on how the disease progresses.
I hope this was helpful. Stick around on this web site, this has been my saving grace! The people and information here are wonderful.
Jen

Jen,
Your answer helped our family--thanks!

 

[Trinityheart8891]

hey,
its Morgan I'm 22 yrs old I have a BAV, and aortic stenosis/regurg, as well as a mild coarct of the aorta, sub aortic stenosis which was resected, VSD which was patched, and mild mitral stenosis. I had a pretty normal childhood considering the fact that I had 2 OHS before the age of five, the BAV is just now getting attention, they thought I would never need any more surgery, but I will need to have that and my mitral valve dealt with at some point, probably in the next 5 years or so, other than that it was sort of an afterthought. I always had to take antibiotics before going to the dentist until the guidelines changed, and my cardio was little hesitant with me competing in sports, but I ran JV soccer, freshman basketball, and track and field for 2 years in high school. I had my yearly checkups, which eventually got switched to every two years,and now we are back to every year with regular echos as far as childhood, it may slow him down a little, but its probably never gonna stop him from doing anything he really wants to do, he may have to take a little better care of himself to keep himself feeling great (little extra sleep, not partying too much, watch the caffeine and alcohol if he's got issues with arrhythmias) but other than that I'm a 22 year old college student working 2 jobs I will graduate school and be eligible to take my boards to become a respiratory therapist in may, I pretty regularly get to the gym, I go out drinking every once in a while life is good! hey may or may not get out of this without needing surgery, but its best to plan/ assume that he will, and that way you dont get down on it if he does need surgery, alot of BAV patients dont need surgery untill adulthood when their valves start wearing out on them BAVs tend to wear out earlier than normal aortic valves as far as the aortic stenosis, this is more likely to be the cause for his need for surgery, you'll need to see what the cardio thinks about it, but my one piece of advice is to treat him like a normal baby, he is normal, he may have heart issues, but they dont have him, and he's gotta grow up respecting that, yeah he may have to slow down sometimes, but he'll still be able to grab life by the you know what!

hope this helps

 

[Duff Man]

FWIW, I've known about my bicuspid aortic valve since I can remember and I was diagnosed at birth. I haven't had a replacement yet but I figured I should tell you that it's not a death sentence. It never stopped me from taking second place as a 152 lb wrestler in my tri county area. For the most part I forgot I had a valve problem until a few years ago when I had inappropriate sinus tachycardia and went to the docs for it. I'm 25 now and I was recently diagnosed with an aortic aneurysm but my valve is still functioning fairly well. I always knew that my performance was hindered by my valve and it was only obvious to me that I had to work harder and push the boundaries of my exercise tolerance to outperform my peers in athletic events... but I did outperform my peers for the most part. I weight trained, I was on the swim team, wrestling team, football team and I played a little soccer. Weight training is the only thing I would've reconsidered now that I know more about BAV's.

My stenosis and systolic click have remained fairly benign with low gradients. Each valve is different and no one can predict exactly when replacement will be necessary. Some people go their entire life unaware of their BAV without incident and some need an AVR before they're a teenager.

 

[barishan]

Hi, Barishan.

I have a newborn grandson who was born with a bicuspid aortic valve ten days ago, and he will be seen by a pediatric cardiologist who hopefully will give us some answers to questions we have.
How did they determine the level of aortic stenosis involved in your son's situation?
I had my bicuspid aortic valve replaced as an adult so it did not influence my childhood at all.
I wish I knew more to tell you, but for now, I don't.

hi mary,
after birth our pediatrist guided us to see a pediatric cardiolojist.at the 2nd day of birth we went to the ped.car., had an echo and she made the diagnosis of B.A.V and aort stenosis.and after a week we have seen the ped.car. 2nd time in december 5.
now we are waiting for our third appointment it is in december 24.
hope to hear good news from you.

 

[barishan]

hi to all
I would like to thank to mary,netmiff,andrews mom,morgan,wayne,duff man and eveybody for your interest and sharing.on december 24 we have our 3rd appointment with our peiatric cardiologist.we hope to hear good news from her.she told us that especially the first 3-6 months is very important for a newborn because of growing fast.so we will visit her frequently in this period.I will continue to share our resulst and new informations.
any kind of experience and knowledge would be helpful for us.thanks again to everybody

 

[Shone'sGirl]

Hi Barishan! Welcome. I'm 21 years old and I was diagnosed with a BAV when I was born. I had 3 heart surgeries when I was very young, but I played baseball and swam competitively. In gym class I couldn't run as fast as everyone else, but I still participated. When I was 9 I had my BAV replaced after I had suffered from a bought of bacterial endocarditis. If I hadn't had endocarditis, I think my BAV would have lasted longer. Now I can't play sports and I can't run very fast, but I still have a lot of energy and am very active. Except for all the OHS, I've had a pretty normal life.
I hope everything works out!

-Clare

 

[ponygirlmom]

I had no idea I had a bicuspid valve until I was 44 years old. It took that long for the valve to become a problem.