My baby boy has Aortic Valve Stenosis.

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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'm trying to understand the implications of this. Does this imply that valve and/or heart growth typically lags the overall growth of the body? In other words, the body grows which spurs the heart to grow in response? Further, does this also imply that the valve will (or can) catch up at some point?

I guess what I'm ultimately wondering is if valve pressure can actually decrease as a child grows? I've just been assuming it will only get worse unless a surgical intervention takes place. Is that an incorrect assumption?
 
chris,

I've also been told what isfahan is talking about by my cardio, the implication here, I believe, from what I understand is that the valve area cant necessarily expand as fast as the body grows at these points in time, which can lead to a worsening of stenosis of the valve. these are times where they will watch things more closely to make sure this isnt happening, and if it is, to treat it early.

as far as if stenosis can get better as the child grows, it depends, I think on the case, typically I dont think it usually gets better, if anything it stays static. I think that this is a good question to ask the pedi cardiologist though, because this is a very individual outcome. I think at this point its a little early to assume it will get worse. In my case, I've had a BAV with sub aortic stenosis, aortic stenosis, and aortic regurg, and my aortic valve has been pretty stable since my sub aortic resection when I was 4 in 1991 more recently things have started changing, but very mildly. I was told up until a few years ago that I'd probably never need surgery again, in 2007 I was told in the next 5-10 years, maybe longer that I would need surgery to replace my aortic and mitral valves, my new cardio agrees based on my last echo, but I have an appt with him to have a new echo and an appt later this month, so we'll see what he says based on the new echo

hope this helps
 
Hi Chris, sorry to hear your little one has been born with heart problems. I too was one of those children, although my condition is a different one (I had a bicuspid stenotic pulmonary valve, a hole in the heart, an overriding aorta and other problems). I had to have a couple of procedures as a child, but after that I was pretty good for many years. I've just had a new pulmonary valve put in, but am recovering fairly well.

Of course, things have advanced SOOOOO much since I was a child and they are continuing make medical advancements all the time. Your little boy may only require monitoring, but should that situation change the outcomes are getting better and better all the time.

I can also vouch from first-hand experience that kids are amazingly resiliant and cope with a lot of this stuff much better than most adults do. The fact he is energetic and thriving is also a great sign, so I'm sure under the supervision of a good cardiologist his prospects are very good.

All the best,


A : )
 
Chris, since I am the patient I don't have any experience with this, but I am a parent of a young child and I can understand how terrifying it is to have something wrong with your precious baby. I am sure he will be fine, look at how many young adults we have here with similar history of AS.

All the best to you and your little one,
 
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.

*raises hand*

Here I am ... finally!

;)


I'd love to connect with anyone who is going through, or has gone through, a similar thing.

I'd be willing to bet my parents could share some "horror" stories with you from when I was born and growing up. But, none of that may be what you experience with your son. And, I'd also be willing to bet they wouldn't want to scare you either ;).

Very sorry your son has been diagnosed as such, but many thoughts/prayers are headed your way. If you'd like to connect in person, please check out the "Reunions" section here for Chicago area gatherings....



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...RT 66 drive = Sept '09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"These hands are meant to hold" ... All-American Rejects ... 'Move Along'
 

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