DS 28mo diagnosed with Bicuspid Aortic Valve

[NappyChappy]

And now he needs to wear a 24 hour EKG monitoring vest tomorrow because his EKG turned out abnormal. Wishing for the best!

[BESMama]

Best of luck to you and your DS. Try to stay positive...I know it's easier said than done.

[NappyChappy]

Thanks mama! Google doesn't help

[CarrieMF]

My 11 year old has a bicuspid aortic valve. She has never had to wear a holter.

For the majority of people they are fine until they are in their 40's.

My dd is in the minority. She was diagnosed at 11 months and had appointments with the cardio every 2 years until she was 7 and started getting cheat pains during exercise(and walking). She started going every 6 months.

She now has regurgitation with her aortic valve. They figure she will nee a valve replacement before she is out of her teens. A valve replacement is no longer open heart surgery. They have a 2-3 day hospital stay and a much shorter recovery.

She used to be on restricted physical activities but no longer is. She can't do sports like weight lifting or judo and they would prefer no varsity type sports.

She dances 5 hours a week and plays soccer, volleyball, basketball, track in grade 6.

When she sees her cardio twice a year they do a ecg, echo and treadmill stress test. It's about a 4 hour appointment, 90% of which is is waiting.

[NappyChappy]

DS is having to wear the monitoring vest because of a possible Long QT. They definitely diagnosed the BAV today with the ECHO but the vest should tell us more. I just want results asap so we can deal with whatever it is or put it in the past. I have the down time because my mind goes to the worst places.

Is your DD have flow issues from her BAV? They told us he won't be restricted of any activity and it shouldn't cause issues until he's older and the valve has calcium build-up. But my friend who is a dr. told me to be leary of major bacterial infections because bacteria likes to live on malformed valves...

[Happy Mommax4]

Hugs...stay off of google-learned this first hand!


Hope all is well

[CarrieMF]

Originally Posted by NappyChappy DS is having to wear the monitoring vest because of a possible Long QT. They definitely diagnosed the BAV today with the ECHO but the vest should tell us more. I just want results asap so we can deal with whatever it is or put it in the past. I have the down time because my mind goes to the worst places. Is your DD have flow issues from her BAV? They told us he won't be restricted of any activity and it shouldn't cause issues until he's older and the valve has calcium build-up. But my friend who is a dr. told me to be leary of major bacterial infections because bacteria likes to live on malformed valves...

Yes she has flow issues(regurgitation). They didn't start until she was over 7, probably around 9.

I wouldn't listen too much to your friend unless he is a cardiologist. If a valve has an infection yes it is bad, but chances are very low for it to get an infection. I don't see how a misformed valve would attract bacteria more than anything else. In a bicuspid valve it is usually caused by 2 flaps fusing, not really any different then webbed toes.

You do not need to give antibiotics before dentist work either, they changed that recommendation a few years ago.

Fwiw my dd with the bicuspid valve is my kid who gets sick the least. We do not do vax's either. Her immune system is already lower due to her body having to work harder to pump her blood. Giving vaxes would make her more likely to catch something since it would lower her immune system more.

My dd was not in restricted activities until the chest pains started. The flow issues started 2 years after the chest pains, right around when the chest pains stopped.

[7 for now]

I was born with a BAV. It lasted until I was 30. It also caused an aneurysm on my ascending sorta from the pressure needed o pump blood out of the left ventricle. I had to have open heart surgery to have the aortic valve replaced and the aneurysm grafted. I had to stay 7 days in the hospital post surgery.

Some valve replacements can be done minimally invasive or percutaneously but not all. It depends on the circumstances a well as the particular valve. I also chose a human valve because I wanted to have more kids. It does only have a lifespan of about 10-15 years. I will get a mechanical valve when this one wears out. I am 8 years in and still going strong. I have had 4 kids and preg with #5 since my replacement. I take a low dose aspirin daily and that is it.

Sent from my iPhone using DS Forum

[Teexie]

Hugs to you, mama. Stay far, far away from Google!

[UnderTheStars]

My DS (who is almost 3) has BAV too. His was dx'd incidently while they were examining another heart defect of his. As Carrie said, its my understanding that *most* people don't know they have it until they get much older and it has weakened. They are going to keep a watchful eye on DS (yearly echos) but unless an issue arises he has no restrictions based on the BAV itself. PM me if you want to chat, I'd be happy to help if I can!