Baby diagnosed with mitral valve stenosis

[El1995]

Hey! So my three month old has just had an ecg and been diagnosed with a mild form of mitral valve stenosis. He isn't out of breath or anything like that and the Dr said it wasn't abnormally narrow, just slightly, anyone else got this, know of anyone with this, or in the same boat as me? Just want some reassurance I guess x

Our DS doesn't have mitral valve stenosis but he does have a congenital heart defect. His is a bicuspid aortic valve (basically there should be three leaflets making up a valve - a bit like flower petals - they open flat against the wall of the heart to allow blood to pass through then close shut to keep it from back flowing). A bicuspid valve has just two leaflets so doesn't open fully which means the heart works ultra hard. That's lead to aortic stenosis (so the aorta is narrowed). When DS was diagnosed, at two weeks old, we were told it was so severe it was like trying to water the lawn with a hose pipe the same diameter as a straw so pressure was building at the heart level.

DS had a balloon valvuloplasty (a balloon on a catheter which goes up through the artery - in DS's case) then through the heart to pop the valve open making it larger. That disperses the pressure.

DS had to have another one this year as the valve was thickening slightly so pressure was building again. He may have to have a replacement at some point.

But, he is now 11 years old, went on an outward bound holiday with school (with permission from his consultant of course). He did sea kayaking, rock climbing, abseiling, walked 9km through waterfalls in a gorge and generally had a fantastic time!

He's thrilled that Arnold Swarzenegger has the same congenital heart defect as him and has just had a valve replacement. Shows you what can be done.

If it's mild there is every chance they'll just monitor regularly. DS was on annual consultant meetings until this year when he went back to three monthly because of the 2nd balloon valvuloplasty. By the way that was done under general anaesthetic and he would have been out the same day but the procedure was delayed because of an emergency so we stayed in over night. Apart from a lot of bruising he was walking without pain the next day, had paracetamol to help him get to sleep and by the third day was back at school with no pain killers at all.

The valve issues are seen so often that consultants know exactly what they are doing. It's easy to say 'try not to worry' but these are relatively common amongst heart patients so the technology is growing every day.

Have they arranged a check with a heart hospital?

Thankyou so much for sharing your story, it's only a mild case and the Dr said she could barely hear the heart murmur so was quite shocked when it case back to us that he had this issue and he's got a few bits and bobs that haven't closed up yet but apparently he'll more than likely outgrow it :-) in terms of his mitral valve stenosis, it needs to be monitored and we've got and appointment in London in October. I was just wondering if he'll live with it carefree or if it'll effect him severly in hos everyday life. I went in expecting them to send us home saying everything would be fine x

Bump

I'll give you a bump as well! Are you going to GOSH or Evelina? DS is under Evelina. Both are great hospitals (along with the Royal Brompton) so your DS is in very good hands.

It's worth having a search on Facebook. The Evelina has a heart children's charity (Evelina Children's heart organisation) on Facebook or Echo-uk.org is the name of the charity's own website.

If you're going to a different hospital there is sure to be something similar for them.

You'll probably find a lot of people with similar conditions on those sites.

Good luck - it's a worrying time but the consultants know exactly what they're doing.

@londonjax he's going to the royal Brompton next week to get a full diagnosis as he was a bit wriggly in his echocardiogram and other test. Yeah I just haven't found many stories on mitral valve stenosis, so am unsure if it's more or less serious than aortic valve stenosis etc. At the moment you wouldnt even know he had it, he's very awake, alert and active, very good colour in him and his breathing is very normal, so I don't know if it has the potential to worsen and that's what's worrying me. The Dr the other day was basically like don't lose sleep over it if he's well In himself, which he is. I would just really like to beable to hear about other people with this condition and how they live their life, Thankyou for your replies x