Dodgy heart valve

[Ebb]

I posted a couple of months ago about Ds, now 9mths, being diagnosed by the GP with an irregular heart beat. He refered us and we finally saw the consultant today. Ds had an ECG and an echo and it was discovered one of the valves in his heart is narrow and the flaps that should open to let the blood through aren't opening properly. There was a name but I wasn't taking it all in properly. The consultant said he would need a 'procedure' under GA where they insert a balloon into the heart to enlarge the valve. He couldn't tell us when he might need this - maybe 4mths, maybe a few years. We have to see him again in 4mths time. The consultant also said eventually he would need a new valve in his heart but hopefully not til he was fully grown.

Has anyone else been through this? Ds is a happy and, seemingly, healthy and very active 9mth old. I think I had convinced myself it was 'just' a heart murmur and would probably heal itself. Trying not to think 'worse case senario's' but am obviously worried. Any experiences / advice?

Thanks in advance.

My dd2 (now 8) has mild pulmonary stenosis - which is a narrowed pulmonary valve. She was diagnosed at about 6 months after the murmur was first heard at her 6 week check.

We have been very fortunate and she has remained perfectly well and is unlikely to ever need treatment - if she did it would be by stretching the valve in the manner you decribe but as I say it seem unlikely for us. Therefore I don't know exactly what you are feeling - but I do know how frightening I found the first few months with this knowledge. I was terrified of losing her - it's as simple as that and it made it hard for me to look at what was right in our situation. She was and is healthy and happy.

Your ds sounds very well and that is a really good thing. That this problem is known about and can be planned for is a really good thing. However everything that you have going for you and him doesn't take away the fact that this is not what you thought was going to happen. 1 in 100 children are born with a congenital heart defect but I never thought that would happen to us. I don't think you ever do expect these things and so how ever good the prognosis - and for your son it is excellent by the sounds of things - there are still adjustments to make and fears to face.

If they aren't doing it already ring up and ask your consultant to send a copy of the letter he will do to your GP to you. That way you'll have a record of the consultation to refer to and you will know that you know everything. Other than that - hang in there and enjoy your son. It will be ok.

Ebb - sorry you have these worries about your ds. I agree with NL, it's good that this has been discovered now and they can kep a close eye on him. The uncertainty of it all can be hard to handle. My dd has substantial cardiac problems and we are currently waiting for her to have another procedure similar to the one you describe. The procedure they are referring to is called an Interventional Cardiac Catheter. There's some info here

It's a good idea to get a copy of the letter - most units send these out to you now as a matter of course. Also if you have further questions you could call your hospital and ask to speak to the Cardiac Liasion Nurse; most of the specialist childrens heart units have them and this is just what they are there for. It's not easy to take all the info in at the time.

Thankyou everyone. I know I am glad it has been discovered early. I'm sure it would have been far worse if he'd have suddenly got ill and had to have emergancy surgery.

The consultant was very precise and straight to the point whilst not alarming us. At least we have confidence in him! As far as I am aware the hospital has a very good reputation.

I think the thought of him having to have a general anaesthetic potentially when he could only be13mths freaks me out the most. I've never had a general but it's always scared me for some unknown reason. I really hope he doesn't have to have one so young.

My first instinct is to want to fatten him up a bit especially as the HV was making noises about his slow weight gain . He's fallen below the 50th centile but is 75th for height. Would the body burn more calories if the heart has to work a bit harder to pump the blood? Clutching at straws here! He's got no 'back up reserves' of baby blubber if he gets ill.

Saggas I hope your Dc is okay and the procedure goes okay. How old is your Dc?

Hi there

The DD of a friend of mine has something similar, and the family are now involved with a charity which may be able to help you with more information.

Link is here - they have another page of links on their website for other organisations which might be useful resources for you as well.

Wishing you and your DS all the best.

My DH was born with a number of heart problems including coarctation of the aortic valve which he had surgery to correct as a child. He was left with aortic stenosis, which he was told would require valve replacement surgery at some point in his thirties. He is forty now. He has an MRI scan every year to monitor the extent of the stenosis and so far it is stable and surgery is still a long way in the future. There have been huge advances in valve replacement techniques in the past few years and it is no longer the major procedure it once was.
The only limitation DH has on his life is that he is not allowed to take part in competitive sports 'at a high level' - meaning he couldn't train at the level of a professional athlete. Otherwise the heart problem hasn't affected his life as an adult at all.
DH's consultants have always been quite vague about time scales too, but the monitoring he gets is absolutely first class.

Ebb - she's 15 now .

Yes it is true - if his heart is working harder to pump blood through a tight valve then he will be using more calories. It's like constantly walking uphill. dd was off the bottom of the weight centiles for a long time despite additives to her food to increase calories.

On the link Bocci has posted there is a link to Heartline. They have a busy message board if you feel you need support.