Getting Our Kids Tested for BAV

[KAJ]

In the past few months, we have been able to get 3 of our 4 children tested (by echos) for BAV. Our oldest (13) and one of the 6 year old twins both have normal valves. This past week, our 10 year old daughter was tested. Two of the leaflets on the aortic valve are fused together. The pediatric cardiologist said there is some "slight" leakage. He also stated the root is measuring at the "high end of normal" for someone her age. He wants her to be checked once a year. She will have to take antibiotics any time she goes to the dentist.

The doctor also checked for symptoms of Marfans. She does not have it. We are disappointed and saddened but not suprised at the condition of her heart. My thought has been all along that if any of our children have a heart problem, it would probably be her since she has the build of her father (tall and thin). She is currently and 5 feet and 3/4 inches tall. Naturally, my wife and I have several other questions and concerns but will gradually start to deal with them. We are thankful that we know about this now rather finding out through some other way later.

We still have to get the other 6 year old twin tested. We are also trying to stress the importance to other family members that they be tested, especially my twin brother. The doctor also suggested we talk to a Geneticist.

Karl

 

[aussigal]

You are doing a good job Karl...
I know its a bit of a worry at first to admit to yourself that you may have unknowingly passed this onto your kids but I soon realised that I didnt blame my parents for me having a BAV so my kids probably would feel the same...

As it turns out they havent had any problems or worries that have affected them. They also thought it was a good excuse to get a 1/2 day off school to go get echoed and actually expect special treatment now from everyoe cos theyre "extra-special". They do have to have the antibiotics like your daughter but that is the limit of their restrictions.

My 11 yr old also has an enlarged ascending-aorta that we are watching closely. He also has a leaky valve as does our older BAV son. Our youngster is also the kid I suspected most of having a BAV. Our boys are under the care of our local kids-specialist-Cardioligist so I am confident they are being well looked after.

I will be interested to hear how you go with the last echo of your kids and also about convincing other family members...I get the feeling they are like mine who adopt the "if I dont look for this I havent got it" attitude. It took a while for my sister to go get scanned, she eventually came back all-clear but she refuses to get her kids scanned which concerns me.

You and your wife are doing a wonderful job...

 

[traumahob]

Karl,
John feels the same about his antiphospholipid syndrome.In the past month we found out one of our sons has tested positive and we are awaiting the results for our second son. They are both adults. The son waiting for results also has a 5 year old child who needs to be tested.John's dad recently developed a DVT and pulmonary embolis after ambulatory surgery, so now he needs to be tested too. He's 82.This syndrome was only identified 10 years ago.The gift that keeps on giving Best of luck, Deb