AS with Aortic Regurgitation

Catie - posted on 12/31/2008 ( 8 moms have responded )

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My son was diagnosed with AS at birth. He has been very lucky to have had no problems with it at all, even surprised the doctor. However a year ago his doctor noticed he had developed aortic regurgitation. She told us that at best Art would be put on meds at our next visit. He has now been on the enalapril for 8 months. I have been searching and searching for information and other parents who are going through the same thing, but I am having no luck. The only information I can find explains the leakage happening after surgery, but Art has not had surgery yet. If you are going through the same thing or know where I can find some good information, please let me know. I'm looking for a good support group.

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Catie - posted on 09/02/2009

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The hardest part about it all is that both of our sons will have to get worse before they get better. It scares me to think about it so I have tried my best to take it all one day at a time. I'd be happy to chat with you!

User - posted on 09/02/2009

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Hello :-)

Isaiah was diagnosed at 2 weeks old, with severe aortic stenosis, with a bicuspid aortic valve. He had a small operation when he was 2 months old where they put a catheter up through a vein in his groin and inserted a balloon to widen the aortic valve as it was very narrow. The procedure went well althouh now he has regurgitation, at this stage the leaking is moderate, as soon as it becomes worse he needs either a valve replacement or to have the valve fixed. He has just turned 1, i'm so worried about it, we are now on 3 monthly visits with the cardiologist. His Dr said he'll definately need surgery sometime between now and age 5. I cant wait until its all fixed and then i dont need to worry. I'm a single mum and its hard to be positive all the time. Isaiah is my whole world and the thought of him having open heart surgery is very scary. It has'nt held him back though he is very active and healthy to look at him you'd never think he had a heart condition. I'd really like to chat with you sometime :-)

Katie - posted on 09/01/2009

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Hello everyone... this is my first post. I think I have to start by saying that I have seemed to be so strong throughout my sons life because of denial. It hasnt really hit me yet, although its getting close to it. I just dont want fear to consume our lives. It all started the day Tanner was born. They said he had a heart murmur and they were going to do some tests, they werent alarmed and therefore my husband and I were not alarmed or very concerned. They still allowed us to take him home from the hospital that next day but had to have the pediatric cardiologist appointment set up asap. We saw the PC right away and he told us after the tests that he had Aortic Stenosis and it was a moderate case. We had to go back in a month to get it checked out, but he should be fine as long as the valve grew along with him. We thought he would be fine as it was mainly just a murmur and you hear about so many people living with murmurs. The second check up came and it was not good. He was severe and though we did not see any signs, we would if we didnt act quick. A week later at 2 months old he had a balloon vavoplasty done. He recovered quickly and the balloon was a success in getting him back to moderate state. They said they created some regurgitation and therefore probably would not be able to do another balloon if it came to it, it would have to be surgery. SO right now it has been two months since his balloon and he is still at the moderate level. Our doctor wants to see him every three months and says that he expects to have to do surgery at 1.5 to 2 years. He wants to do the Ross Procedure.

Since the time (Tanner is now almost 5 months old) has flown by, I have gotten the eerie feeling that the 1.5 year mark will sneak up on me and so I have started my research and it has been saddening. As I said it has not all hit me, but I have been reading the reality of everyone elses cases and its hard to sit here and imagine my little Tanner having to go through any of these surgeries. The balloon thing was so un invasive and he recovered so quick. He was only in the surgery for two hours. I already feel thankful to have found a support site and I look forward to getting to know some of you on here... especially if you know more about the ross procedure.

But for now... i feel blessed to get to concentrate on the simple things... he is learning to eat cereal now! We all must soak in all the little things and trust in God that He gives our little ones the strength to stay with us all!!

There may not be many of us, but there are people out there going through very very similar things with their children as I am finding... its great and I really look forward to talking to anyone!

User - posted on 08/26/2009

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Ello my son Isaiah is 13 months he has AS and a bicuspid aortic valve he had his first balloon procedure at 2 months, we saw the doctor a couple of weeks ago he said he has moderate leakage, he wants to see him again in 6 months, his doctor has said he'll need surgery to either fix the valve or replace probably sometime between now and age 5. i cant wait for it to just be fixed waiting for each appointment is hard as you dont know when they are going to say ok its now severe enough to have to do something about it. I worry it will hold him back as he gets older i dont want him to have restrictions on his life he is very active at 13 months and looks so strong and healthy you wouldnt know he even had a heart condition by looking at him.

Catie - posted on 04/16/2009

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My son is now 4 and we had his 6 month check up on Tuesday.  It went surprisingly well!  I was of course very nervous because you can see just how much is leaking from his aortic valve and I was really worried when she said she needed to go get her calculator.  She told us that Art's leakage is now border line moderate but felt confident in saying she didn't need to see him for a year!  I got tears in my eyes because I was beginning to think we would never hear those words.  I have been searching for other mothers that are going through similar situations and it is so nice to know I'm not the only one out there anymore. 

Tiffany - posted on 03/12/2009

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I know this is old but I just joined, lol! My son was also born with AS, AR, and has a bicuspid valve. He's still awaiting his first balloon dialation, he was born with only a mild case but by 2 months his gradient jumped to moderate. His cardiologist guessed he'd have suregery within 2-7 months, well he'll be 15 months in a week and is still hanging in there. He's bordering severe so I know he'll have surgery soon. I'm so scared for his simple surgery, I couldn't imagine what other CHD moms go through!

Catie - posted on 01/21/2009

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Thank you so much for your response!  I also call my son my "miracle baby!"  The thing that is so frustrating is that I feel like we are just waiting around until his heart gives out and only then will his heart be able to be fixed.  I just wish there was a way to really know when Art will need the surgery.  We are very lucky that his AS is mild at the worst, we were told that a year and a half ago.  Then last year we found out that although his AS was unchanged, his regurge was getting worse and he won't be able to play any team sports.  That is hard because all of his friends are beginning to do soccer, basketball, and baseball and he doesn't really understand why he can't.  I really appriciate you giving me the link to your page.  It has made me think about doing the same kind of thing for Art, although more for me to get my frustrations and celebrate the good things with my son.  Thanks again and if you know of anyone else or any other sites that would be helpful, please send them my way.

Julie - posted on 01/21/2009

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Hi! Our son Weston was also born with AS with regurg at birth. They did multiple balloon caths before going in and doing a Ross procedure and a mitral comissurotomy (he also had mitral stenosis). He ended up needing a 2nd Ross a month later due to some mitral valve complications and got a new metallic mitral valve. Since then, he has grown and really come into his personality. It was a LONG road. He is 2 now and has had so many hospitalizations and sicknesses. Good luck!



Here is Weston's caringbridge site-if you go to the very first posts, they are from right when he started having surgeries

www.caringbridge.com/visit/westonkeeton

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