My baby boy has Aortic Valve Stenosis.

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ChrisM

My infant son was diagnosed with mild Aortic Valve Stenosis at 4 days of age (pressure gradiant of 20-25 mlhg). No other heart abnormalities were present.

He is now 16 weeks old and we just had our second follow-up with our pediatric cardiologist and found out the condition has progressed, with the pressure gradiant now at 35 mlhg, which I believe now puts it into the "moderate" category. Apparently his heart is still structurally normal, with the condition so far causing no effect on his left ventricle, etc.

Our cardiologist says no intervention is necessary at this time and that we will simply continue to monitor it, with our next appointment in three months.

Does anyone here have a child with Aortic Valve Stenosis? Our son is an energetic, happy, thriving baby and this entire thing has me completely bewildered. Do we have to worry about losing him at an early age? Are the various interventions effective, if necessary?

I'd love to connect with anyone who is going through, or has gone through, a similar thing.
 
Chris I was born with Aortic stenosis and I am now having problems with my valve at 35. I hope your little one can make it as long as I did. My doctor found my heart defect at 2 years old . I am not a Doctor so I can't tell you that your son will be like me, but I want to give you a positive outlook at your son condition. Best of luck to you and your little one. Congrats on Your little Boy
 
Chris, a big welcome to you and your precious baby.
We do have a few members who have either had surgery themselves as youngsters,
or now have children who have had the surgery.
It may take several hours for them to reply because of various time lines, but you will get responses.
 
Welcome! First, I'm so sorry that you and your sweet boy are having to deal with this. We have some pretty in-the-know Heart Moms that will be along shortly, I'm sure.
 
sheridan07 said:
Chris I was born with Aortic stenosis and I am now having problems with my valve at 35. I hope your little one can make it as long as I did. My doctor found my heart defect at 2 years old . I am not a Doctor so I can't tell you that your son will be like me, but I want to give you a positive outlook at your son condition. Best of luck to you and your little one. Congrats on Your little Boy
Click to expand...

Thanks for the response (and to everyone else). I never imagined so many replies so quickly!

Anyway, while I hope his condition never requires it, I have a firm belief that tissue engineering will make huge advances over the next 10 years and that replacement valves of all sorts will be custom made from each patient's own cells on a routine basis. Hopefully sooner.
 
Chris, I just want to add my welcome and I know there will be other "heart Moms" along to help. Mary just had a grandson born with a bicuspid valve and you might want to pm her as well. Just look up Mary under members list, click on her name and you can send her a private message.
 
Hi Chris, My son has different CHDs but I know plenty of parents from my CHD groups whose kids have Aortic stenosis. One group has alot of "portraits' that you can read different kids stories by Dx http://tchin.org/portraits/by_diagnosis.htm there are quite a few kids with AS altho some also have other CHDs.
Like you MY big hopes are for TE valves and conduits. Lyn

ps I would plan on him living a long happy life even with intervention :) I know that is hard to believe now. IF anyone told me when My baby was little he would have had 5 OHS and various other procedures before he reached 20 AND still played sports was a Scout ect I would not have believed them
 
ChrisM said:
Thanks for the response (and to everyone else). I never imagined so many replies so quickly!

Anyway, while I hope his condition never requires it, I have a firm belief that tissue engineering will make huge advances over the next 10 years and that replacement valves of all sorts will be custom made from each patient's own cells on a routine basis. Hopefully sooner.
Click to expand...

I know since I was little, valves and surgery have come along way. I am a dad of a 6,4 and 2 year old boys and I know you will enjoy your little one.
 
Hi and welcome!:)
As Phyllis mentioned, our grandson was born 5 weeks ago with a bicuspid valve and a PDA and PFO that took sometime to close. Charlie sees the pediatric cardiologist at the end of January for a determination about the mild stenosis that has been diagnosed.
I can't help with anymore information, but I certainly understand what you are dealing with.
 
welcome to VR. we have a long time member (maybe one of the originals when this site began) who was born with heart problems. His name is Cort. He will be reading this soon. he doen't check in every day but a couple times a week. other moms/dads will also be in and give you some input regarding their beloveds. they can also recommend another site or two that can help you, I am sure.

I am so sorry your baby boy has this but from what we read in here there is so much known these days about the heart that you should be able to find what he needs as he grows. We know you are worried and scared so just want you to know that someone is in here 24/7 and you can drop in any time you want a listening heart. Blessins........
 
Chris,
my name is Morgan, I am 22 years old
I was born with BAV, I have aortic stenosis/regurg, among other congenital heart defects, I just wanted to also chime in and give you another case of a positive outlook with AS. Hopefully all goes well, but even if he does need surgery, there is plenty going for him these days. I had 2 open heart procedures before the age of 5, one being a sub aortic stenosis resection, and I am living a relatively normal life, college, working 2 jobs, own a car, go to the gym when I get to it, etc. if you have any questions or concerns, feel free to ask
 
Hi Chris,

I'm so sorry to hear about your baby. I was also born with BAV/aortic stenosis, have had two surgeries, and want to let you know I'm still going strong at age 52. I didn't have any real problems or limitations while growing up - didn't even get a pass out of gym class, which I despised. :)

The good news is that technology has come so far. I remember my first cath back in the 60s required a week's hospital stay! Compare that with my last cath in '99, when I came home the same day. And the improvements/advancements will no doubt keep coming.

Best of luck to you and the new baby.

Cheers,
Michelle
 
I am sorry to hear about your precious baby. I'm sure if they keep a close check on him; everything will be fine. Best wishes to you and your family.
 
Just wanted to welcome you to this forum & to tell you how sorry I am to know that your little boy has this heart ailment. But as you can see from other reponses, there are a lot of other people here that were born with this same defect & are still around today & will continue to be around for years to come!

Your doctors are doing the right thing by watching how things progress and I'm sure they'll know when it's time to treat the problem surgerically if necessary.
 
want to say a big welcome and hello,

glad your here ,sorry for reason,but you can't find support
like here,so for this reason glad you found the site

zipper2 (DEB)
 
Hi Chris, my son was born with avsd although not the same condition as your son, my son had a hole in the heart and mitral stenosis and regurgitation. I dont know what the pressures of my son was as we was never told. He managed to make it to 18 months before having his first surgery, although looking at him you would never of know, he was such a happy baby and looked so healthy. He just had his second surgery in july at age 10 and it is a amazing how well children recover and get over this surgery, my son had a few complications after both of his surgerys but has done brilliant. Putting my child through surgery is the hardest thing i have done in my life but lots of people have gone through it and you just seem to cope with it because you have to. Glad you found the forum, as this sight as helped me so much and i will need help when my son as a mechanical valve replacement.
If you have any questions on the surgery side of things, when the time comes. Feel free to email me. Also there are other heart mums on here, that i'm sure will be of help. All the best.
 
Toddler with aortic stenosis (AS)

Toddler with aortic stenosis (AS)

Hi
My son, Wren (2), has aortic stenosis and his current gradient is the same as your sons! (its 32-38 on various echos). His was progressive and not isolated to the valve (ie your son has a less-serious heart defect!). It became critical at 6 weeks and he has had 2 heart surgeries and 2 caths but is still a totally happy and developmentally normal toddler. Feel free to email me here or contact me through our blog: http://echobaby.blogspot.com if you want any more info.

From our experience, these are the important things we have learned:
1) You should expect your son to live a long and happy life.

2) Kids can go a long time with pressures adults could not tolerate. Ped Cardiologists tend to avoid open heart surgery until the gradient is in the critical range (50+?? for my son it was 60) and/or the left ventrical shows signs of hyperplasia (enlargement) or failure (scar tissue on MRI).

3) The first intervention for isolated AS is generally in the cath lab. They would try a balloon valvuloplasty - low risk and seldom requiring more than a couple of days inpatient.

4) If his valve needs replacement as a young child they would do the Ross procedure. If he needs this, CHOOSE THE VERY BEST PED CARD THORACIC SURGEON YOU CAN FIND. Travel if necessary. It is a complex procedure that is very successful in the hands of an experienced surgeon but is not as safe done at low volume peds centers although they offer it.

5) The most important thing in your regular card clinic visits is whether the stenosis remains isolated, is not progressive (eg gradient stays within range of moderate) and there are no significant LV thickness changes. In that case you just become friendly with your card and live with it! This can go on for many many years.

6) The first 2 years and the early-teen growth spurts are stress times for patients with AS because the valve cannot always grow at the same rate as the body. They watch you more closely to make sure you are stable at those periods.

I hope your son continues to do well and that you have found PDHEart and other specialist pediatric CHD support groups. Email if you want contacts.

- Shannon in Seattle
 
Thanks to everyone for all of the replies and support!

Obviously I'm still just trying to get my hands around this issue...it's all still pretty overwhelming. But the responses so far have been very, very helpful. I'll obviously try to keep everyone updated with my son's progress...hopefully I'll be an old hand at some point and be able to offer advice to some new, scared parents down the road.
 
ChrisM said:
...

... I have a firm belief that tissue engineering will make huge advances over the next 10 years and that replacement valves of all sorts will be custom made from each patient's own cells on a routine basis. Hopefully sooner.
Click to expand...


Chris, welcome to VR. Keep up the positive hopes/thoughts you have, as indeed the medicine is advancing very rapidly, and hopefully everything will go fine. Will keep you both in my prayers.
 
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