Hi I'm new to this site. My 7 month old son just got diagnosed with Bicuspid Aortic Valve due to his primary care physician hearing a heart murmur at his routine ...Read more
Hi I'm new to this site. My 7 month old son just got diagnosed with Bicuspid Aortic Valve due to his primary care physician hearing a heart murmur at his routine check up. She referred us to a cardiologist where they did an ultrasound. So they happened to just find this. As most of you know probably know it's a scary thing. I decided I needed to stay off google and read more on people who are going through similar situations. His cardiologist said everything is functioning normally and he will just have to see a cardiologist for the rest of his life to continue to have it monitored. She mentioned it can be genetic so I'm getting my 6 year old daughter looked at next week. Any feedback or success stories or insight from anyone? I'm getting better every day knowing this was out of my control and thankful it was found, it's just scary!
Arlene VanNorstrand Hello Elizabeth, That is scary news for a mom. I found out about mine when I was 7 or 8 years old. ... Read more
Arlene VanNorstrand Hello Elizabeth, That is scary news for a mom. I found out about mine when I was 7 or 8 years old. I led a very active childhood growing up on a farm and working hard. I played sports and continued to be very active until about 2 years ago. I am now 52 and I am having my bicuspid valve replaced on Friday. My children are 30 and 27 and they are being checked. Just remember they can do amazing things today with the heart and in the future who knows what will be possible. Prayers and Blessings Arlene
Mike Roskowinski Yes Elizabeth stay away from google. That is the worst Doctor you could contact. I myself was born ... Read more
Mike Roskowinski Yes Elizabeth stay away from google. That is the worst Doctor you could contact. I myself was born with a heart murmur and only was checked once when I was really young. Everytime I went to the doctor they would say I have a heart murmur and it will go away. Finally at the age of 39 I decided to ask for a Echo and found out that I had a monocuspid valve and a 5.3 aneurysm. The best thing is that you found this early and now you have someone to monitor it. If you have questions feel free to ask. This community is the best thing that happened to me since I did what you did and started asking Dr. Google. Real people here that have gone through it and are going through it. Thoughts and prayers to you and your family.
Alex Sigalov Hi Elizabeth, i was diognozed with BAV at 12 year old. Growing up i was able to play any sport do any ... Read more
Alex Sigalov Hi Elizabeth, i was diognozed with BAV at 12 year old. Growing up i was able to play any sport do anykind of activities without any problems, and did not start feeling any symptoms until mid 30s, i am 39 now and just had my valve replaced 6 weeks ago. Its scary thought for your children but in 30 years they will probably be amazing new technology and treatment options
Elizabeth Jarrett Thank you so much!!! IT really is easing my mind hearing all of your comments and stories!!! :)
Jeffrey Dyer Hi Elizabeth...I was born with a BAV and didn't find out about it till last May...50 years later. I ... Read more
Jeffrey Dyer Hi Elizabeth...I was born with a BAV and didn't find out about it till last May...50 years later. I was completely asymptomatic...I never would have known about it had I not had an MRI done for another medical issue. I was always told that I had a murmur from the time I was a child, but no dr's ever thought anything of it. As you and others here have said, Google and Youtube are not your friends. Those are the worst case scenarios. You've come to the right place. Here you'll find people who care and have been there. I had my BAV replaced and ascending aortic aneurysm fixed on Aug 5.
It most definitely is genetic. I'm happy to hear you are having your daughter checked. Have YOU been checked?
Marie Myers I also found out I had a BAV when I was in my 20’s. I did not even have a regular doctor until I wa ... Read more
Marie Myers I also found out I had a BAV when I was in my 20’s. I did not even have a regular doctor until I was in my 40’s. When I was in my 50’s, my primary doc would send me for echocardiogram every 4-5 yrs. I was busy playing tennis, working full time, and horseback riding. Finally at age 62, my routine echo showed a 4.8 cm aneurysm. I had an AVR, aortic root replacement, and ascending aneurysm resection at age 63. I was back working part time in 8 weeks, and am back playing some tennis and working part time. If your kids have a BAV, it is wonderful that they are forewarned . Many people with BAV never need surgery, and both my brother and sister did not have a BAV. Try not to worry too much about what “might” be. I know it is hard, but I can say my abnormal valve did not affect my growing up/working life in the least.
Rose Madura Hi Elizabeth. I found out at age 7 that I had "heart problems " from rheumatic fever. Saw cardiolog ... Read more
Rose Madura Hi Elizabeth. I found out at age 7 that I had "heart problems " from rheumatic fever. Saw cardiologist annually. At age 59, I had open heart surgery to replace aortic valve, replace aorta and repair the arch. It was then I found out I had a bicuspid valve since birth and the surgeon said it was pretty bad. I guess the rheumatic fever damaged it all the more. I'm sure you are scared but be thankful that you know now. They do amazing things. I'm sure my parents were horrified to find out in the 1960's when open heart surgery did not exist. It's amazing what can be done and by the time your son needs surgery, they'll be able to do so much more! Will be praying for your family.
Willie Radl Hi Elizabeth, similar to others here I had BAV and grew up playing sports, exercising, weight lifting ... Read more
Willie Radl Hi Elizabeth, similar to others here I had BAV and grew up playing sports, exercising, weight lifting, etc. I was not restricted by the valve and didn't even know I had BAV until I was 19, and overall didn't have any symptoms I was worried about. At 32 I ended up getting surgery, this was after years of following and tracking heart size, etc. I also have a brother and uncle who have a BAV, neither of them have needed to get surgery and lead normal active lives. Its probably hard to know how to feel but I would say don't stress, and just make sure to have your son follow up with cardiologists to get periodic check ups.
I am from: Williamsburg
It most definitely is genetic. I'm happy to hear you are having your daughter checked. Have YOU been checked?