Two year old son w/ BAV

[francie12]

Hi Julie,
Welcome to this great forum. It was a life-saver for me when I found out about my 11 yr old son's BAV and dilated aorta. The shock was immense for me, and the only thing that seemed to help (besides the incredible generous people on this forum) was informing myself as best I could about the condition and researching the best drs and surgeons. Getting some knowledge enabled me to gain some feeling of control and to realize that though it's scary, this is a condition you can do something about. Even though it is something Matt will have to deal with in his life, it is fixable, and we're really counting our blessings for that.
Here is the good news. Even though Matt's valve was leaking pretty badly when it was discovered, and his left heart was enlarged and going up with every echo appointment, he is now 17 and a half, and things have been leveled off and stable for a couple of years now. He got through a huge growth-spurt, and the dimensions of both the AV and the asc AO stayed the same, for the first time ever. His next echo is in February, and my stomach is already starting to get a little tight, but all of our attention now is on the positive--applying to college, and enjoying senior year. At some point he will have the surgery, but I now know a little what to expect, and we will get through it.
Please feel free to PM me if you would like. All my best wishes, Jane

 

[francie12]

Hi again,
I forgot to mention that my younger son, almost 14 yrs, has a normal AV, but does have some dilation of the aortic root. He got yearly echos for three years and since it seemed to be stable, is now on an every three to four year echo schedule. My husband also has the dilation along with the normal valve. He is 57 and has not had a problem thus far. Hope this is reassuring.
Jane

 

[Lynlw]

Hi Julie,
Welcome to this great forum. It was a life-saver for me when I found out about my 11 yr old son's BAV and dilated aorta. The shock was immense for me, and the only thing that seemed to help (besides the incredible generous people on this forum) was informing myself as best I could about the condition and researching the best drs and surgeons. Getting some knowledge enabled me to gain some feeling of control and to realize that though it's scary, this is a condition you can do something about. Even though it is something Matt will have to deal with in his life, it is fixable, and we're really counting our blessings for that.
Here is the good news. Even though Matt's valve was leaking pretty badly when it was discovered, and his left heart was enlarged and going up with every echo appointment, he is now 17 and a half, and things have been leveled off and stable for a couple of years now. He got through a huge growth-spurt, and the dimensions of both the AV and the asc AO stayed the same, for the first time ever. His next echo is in February, and my stomach is already starting to get a little tight, but all of our attention now is on the positive--applying to college, and enjoying senior year. At some point he will have the surgery, but I now know a little what to expect, and we will get through it.
Please feel free to PM me if you would like. All my best wishes, Jane

I'm glad everything is going so well, but have to say it is amazing to realize Matt is 17 now, can you believe how old our "boys" are getting? Justin was 17 when we first started coming here and he'll be 22 in April.

 

[francie12]

Hi Lyn--I know, isn't it crazy? I can't believe Justin is 22. And how old is little Katie now... Can't believe how time flies! All the best to you and Justin.
Jane

 

[barb]

Hi Julie,
Welcome. I'm glad you found us. There is a lot of wonderful warm support here.

I was born with bav and by age 11 they diagnosed stenosis. I lived with no restrictions and went about my life becoming a mom (to my 10 children). I was kind of oblivious and didn't follow up with cardio for many years. My son's cardiologist (tell you his story in a minute) warned me to get in and get checked. I was still fine at that check but a year later was diagnosed with an aneurysm and worsening stenosis. This was at age 45. We waited and watched for a year and a half and I required surgery at age 47. I am recovering beautifully.


My youngest son was born 5 years ago with a different heart defect. He was also born with down syndrome. We escaped open heart surgery and he had a repair in the cath lab but we have met many many families of children with down syndrome who have heart defects (heart defects are very common in these children). I tell you this because I have seen the amazing way that children go through ohs and the miracles of lives being saved that couldn't have been saved just 20 years ago. If it comes to that for your son, he will be fine. I've seen it many times and just having gone through it myself I can tell you again he will be fine.

What you are living now is the hard part. I remember being in the cardio's office for weekly echos for the first 2 months of Michael's life. Just a little stressful as you know. Whe I was born with bav they had no way of knowing it which probably saved my parents the stress you are going through but of course we're thankful to have the tchnology we have today. I'm betting your son will have a very normal life for a long time before you might have to face the possiblilty of surgery and if not you will see how amazingly well these little guys handle it.

God bless.

 

[mlkyle]

thankyou Jane

thankyou Jane

Dear Jane,

Thankyou so much for your time and helping me so much. I have had two years to do the research and gain the knowledge about my babys BAV. No I am trying to learn as much as possible about his bulge at his aortic root. That finding on his last echo has made me an emotional wreck...it has been three weeks since I found out and the tears are subsiding but at night I still sob if I let myself think of him having OHS while he is still a baby...hopefully the two surgeons I am sending his records to will releive my fear and tell me he probably won't need surgery for a couple of years...

I am so so very happy that your son has make it to 17 w/ no surgery. I hope and pray that is case for my Kyle.

Sincerely,

Julie

 

[Andrew'sMom]

Lyn, Thanks for sending Julie my way. Her son's diagnosis is very similar to my Andrew's, and I have contacted Julie thru PM. I've been scarce around here lately .... I'll try not to be such a stranger. Thanks again Lyn, Jen

 

[delvalle6]

Welcome to the site!
I'm sorry that you have to worry about your son. It's a roller coaster that is just beginning for you. My son was born with a "murmur" that turned out to be diagnosed as BAV with stenosis at four months. He is eight years old now and has hasn't had any surgical interventions yet. His condition has woresened and he will be having surgery this year, maybe in the next few months.
I guess my point is kids are tricky. Your son's condition could stabalize and not need treatment for a long long time. It could also go the other way, which is why he needs to be monitored. No matter what any doctor tells you, he should be checked at least once a year. I had a dr. say I could wait two years--just so happens that his valve deteriorated significantly in those two years. So.. annual checkups- enjoy every moment- know that this is much harder on you than it is on him (right now anyway).
good luck. This is a great place to come to get info and to vent.