Aortic stenosis

[BaconandEgg]

GP heard a murmur when listening to my 2yr DS's chest recently; today he's been diagnosed with aortic stenosis. At present it is said to be mild in degree, but I'm nevertheless terrified. Six month check ups, increased risk of endocarditis, risk of surgery if it gets worse (and, by the sounds of it, expectation that it will get worse at least as an adult when calcification is likely to become an issue). I feel responsible, and I'm struggling to look at him without feeling extremely sad about his life not being as problem free as I'd hoped it would be. I know that this is not the worst news we could have had, and that there are others who would gladly trade their position for this diagnosis, but I'm struggling a bit to feel positive. Can anyone help?
Thanks in advance.

My dt2 has aortic stenosis. He was diagnosed at birth and initially thought to be mild, but was confirmed at a later appointment that it was very severe. He had a balloon catheter to widen his valve (which is bi-leaflet) and has had six monthly appointments since. I am relatively relaxed about it as his eldest brother had transposition of the great arteries at birth and has undergone open heart surgery. I have to say I have felt exactly the same as you at times, but it does get easier. Both my boys live really normal lives at the moment. Nobody would ever know any different and I hope that things will continue that way for a while.

Mild is good though. My father had an aortic valve replacement after living with a murmur for 67 years. It never stopped him doing anything and only gave him issues in later life, mainly because he needed other surgery too.

Thanks Bagpuss. Sorry to hear that you have had the same (and more) problems, but thank you for sharing your experience with me. I wish you and your boys the very best.

Hi BaconandEgg, sorry you've had difficult news.

My dd has complex heart problems diagnosed when she was a baby. I think that whatever the level of problem, the fear and worry is the same at least initially Please don't feel guilty about it or responsible for it; really it does no good and there's no need for it.

Mild is good. That's your positive. Hold on to it

Thanks bacon

How are you feeling today? I think saggar said what I was trying to better than me, but what I will add is that once you get used to the appointments and jargon things won't seem nearly as daunting as they do now.

Up and down, to be honest. One minute I'm fine; the next I wobble. I've realised I need to be stronger in front of DS1. The night of the diagnosis, he slept very badly. At about 4am, he kept saying "It's my fault, mummy. I'm sorry. I make you sad." He's 2 and a half. This morning, the first question he asked when he woke up was whether I was alright. That is, obviously, back to front, so I clearly need to get a grip.

The consultant was quite upbeat (as heart defect diagnoses go, I suppose). The GP who referred us has only come across this once before - earlier this year - and that child needed a balloon procedure within 6 months. Given that the GP has listened to my son's chest a heap of times this year, his take on it is that it has recently developed, and will worsen quite quickly. Which isn't what I wanted to hear.

Plus DS2 was 2 months premature, and had some issues with holes which resolved by his first birthday. However, on discharge there remained a level 1 ejecting systolic murmur which St George's said must, given that the holes had closed, be innocent. I've convinced myself that he also has AS and we've been referred to have him checked out.

I look back on the days before this became an issue and think - what the hell was I worried about this or that for? None of that mattered a bit, and I've spent the last few months fretting over rubbish. I just wish we could go back to only having to deal with rubbish ...

But it helps to "speak" to those who have responded, to realise I'm not alone, that it's not necessarily awful and to realise that some semblance of normality must be achieved. So thank you so much to you for answering my call for help. I really, really appreciate it.

Oh, golly bacon, here have a hug (((())))

I think your gp can only be guessing though. When dt2 was first diagnosed, we had a call from SCBU after we had just arrived home from visiting. The registrar said it was a "for information only" call and that the stenosis was mild and would just need check ups. When the dts were moved back to our local hospital we managed to get dt2 an appointment with ds1s consultant who was running a clinic there. He scanned and then said, "no, it's a bileaflet valve, heart function is fine, see you in three months". When we went back for the follow up, the full extent of the stenosis was revealed and he needed a balloon catheter which was done within a month. Since then he has remained stable, the stenosis has so far remained the same, the small leak he had has fixed itself and our consultant said he would not hesitate to use a balloon again rather that full surgery as the valve had responded so well to it. I honestly didn't think that things would work out so well for him. In the time it took for our consultant to diagnose dt2 and meet with the surgical team, I had mentally prepared to have a second child go through open heart surgery. It was a bit of an emotional roller coaster looking back, but now things are settled and we know what to expect and we cope accordingly because we have to. You will too, I'm sure. I think what you feel now is normal (and I won't say try not to worry, because that's normal too) .

Oh, and sorry for the long ramble, I hope some of it made sense .

It did, and thank you for sharing (and for the hug - which I need and appreciate). It's very kind of you.

Hi,

Our son was diagnosed with aortic stenosis with a bi-cupsid valve (similar to Bagpuss) plus a hole in the heart with regurgitation (basically the blood seeps through into the wrong chambers of the heart because the valve slips) when he was 13 days old. We only found out when he began throwing up and the wonderful GP felt his oxygen levels were too low so rushed us to our local hospital. They stablised him overnight. He had to have a feeding tube put down his nose as his heart was so weak it was struggling to get his digestive system working. The next day he was rushed to the Evelina Children's Hospital where he had a balloon catheterisation. His stenosis was severe. We were told it was the procedure or he would die within a month as his heart couldn't run the digestive and respiratory system at the same time so his body had decided to breath rather than feed - basically he was starving himself in order to try to live. We had been struggling to get milk down him - he'd take ages to complete a bottle (I'd had problems breast feeding which was lucky in a way as we could see how little/much he was actually taking at each feed) So the procedure it was.

He had the procedure at 15 days old. Two days later we transferred back to the local hospital and the next day we came home. He went from taking an hour to feed to finishing a bottle in 20 minutes! Our milk monster (as he then became known) was born!

He started having check ups every three months, then that reduced to every six months. He's now five years old and, for the past three years, has annual check ups as his valve is holding up (they were expecting it to fail before his second birthday). He's at school full time, does PE and drama and can outlast his friends at parties (I have known his friends to be asleep on the sofa at playdates when he was younger and our son still going strong).

I celebrated a BIG birthday a few months ago. We went to bed at 2am - our son was still on the dancefloor with his older cousins at 1.30am. He woke up at 8.30am and did a full day playing at home!

We know our son will have to have a similar procedure at some point and may have to have open heart surgery but we also know heart surgery is leaping forward so we hope the surgery becomes easier before our son needs it.

The surgeon we were lucky enough to have treating our son said to me, on the day we transferred back to the local hospital, "Our job is to treat your child as a patient, your job is to treat him as a child. Let him enjoy his childhood - he has to climb trees, scrape his knees and be a boy. The first time he goes out alone you'll panic, the day he leaves home you'll be having kittens. But it is his life and he has to lead it the best way he can. Your job is to make it a good life the best way you can." I've never forgotten that so our son does everything his friends do. He knows he has a heart condition, he knows what to do if he feels unwell and his friends parents all know too (as does the school). If he feels breathless he stops what he's doing and rests for a few minutes (well, 30 seconds in his case, he hates to miss a thing!) He's had one day off sick from school in the past year. Some of his friends seem to pick up every bug going in comparison.

I also tell people I feel lucky. Our son has a diagnosis. He and we know what he has and what to do to keep him safe. There are a lot of parents out there who have lost children to undiagnosed heart conditions - what you don't know about CAN hurt you in this case.

So, I really know how hard it is, but try not to step too far ahead into the realms of what might happen. Children are amazing creatures. Our son doesn't realise that he's not suppose to have this energy! I used to lay awake every night worrying about our son's future. Then I realised that, whatever that future is, IT IS HIS and he will make the best of it with our help and encouragement just like every other child. We owe it to him to help him get as much enjoyment and achievement from the life he'll have as possible - so my energy goes into helping him do that rather than worrying now.

Sorry, I've waffled on so I hope you'll be able to pick your way through this and make some sense of it. Good luck!