Open heart surgery on 7 mo - scared.

[MoominMum]

Advised today by cardiologist that we will have to make a decision about surgery to correct a heart murmur in our 17 wk old in two months time, with operation to follow a month after if we go for it. I think we both know we'll have to go for it as we're being told it will be best for him and that the surgery is far less risky these days so offers the best long-term outcome. But, shit, we're pretty scared and for him. Anyone had any experience of this in los?

Oh, darling! No experience but I hope someone comes along to help soon. x

My DH had open heart surgery at 6 mths old to repair 2 holes in her heart. It was so scary but went very well and she is doing well heart-wise now.

Where would you go for the surgery?

i havent but heartline are excellant.

cant recall the web address but google heartline, they have a fab messgae board and are absolutly brilliant.

no experience moomin but I believe these ops are pretty straightforward these days.

Sure someone with experience will be along soon.

Can imagine you're feeling down so cyberhugs to you.

Moominmum - Hello

My dd had major open heart surgery at 14 weeks. It was an emergency thing as we didn't know about her problem previously so we didn't have to make any decisions as such. Depending on the heart defect, there is, as you say, often not really a choice. They don't say children need surgery if they don't really need it. Elective surgery is often very straightforward and babies recover much quicker than older children and adults. Do you know the name of your ds's heart defect?

The Heartline message board misdee mentions is here. Please pop along and say hello.

Hello Moominmum, you poor thing. However much people say, 'Oh, it's straightforward these days', you're bound to feel agonised by this.

Still...great friends of ours just went through this with their baby boy at the Brompton in London. Hole in heart diagnosed at 8-week postnatal check but the docs hung on as long as possible before doing the surgery. He was eight months in the end.

Suffice to say I went to see them in the ward 24hrs after the op. He was out of intensive care, off the tubes (as he kept trying to pull them out - the medics were amazed by his energy) and happily bf-ing. Blimey, I said, he must be on massive painkillers? Er, no. Paracetamol!!

Two months on he's fighting fit and raring to get into everything.

Thanks everyone - the support really helps and especially the positive stories.

Sidge - they haven't told us where yet but from the reading I've done so far I reckon it'll probably be Glasgow Yorkhill.

Saggar - it's a ventrical septal defect but towards the top of the v-shaped fascia - so in the thin bit, not the thick bit at the bottom, which is why they reckon it's not likely to close over itself as he grows.

The cardiologist said last time he wished it were either smaller or bigger than it is - if it were smaller he'd just have told us to go home and not worry about it any more as Moomintroll would be fine, if bigger the surgery would be a far more clear cut decision.

As it is he could go on to live with it without any problems but it is already affecting his feeding - he pants and sweats a lot and can't take more than 140ml max at a feed, so feeds about twice as often as his peers, which is pretty tiring for us and for him I guess.

He's an absolute wee trouper and has already sailed thru' surgery for a hernia at 10 wks - they even let him home the same day which is very unusual. He's v strong, has a great sense of humour and holds nothing against anyone, all of which I know puts him in an excellent position to come thru' this really well. In a strange way tho', that's why my heart's breaking for him - it's not about fair or unfair, these things just happen, but somehow it all seems such an abuse of his good nature. I know it's for the best, it's good that he'll be young enough not to remember etc. etc. and I'm probably not making any sense but I just wish I could take this burden off his wee shoulders.

Anyway, thanks again for the support, info and hugs - all very gratefully received.

Oh bless you - you're making complete sense. I think Tallis is absolutely right - however much you are told 'it'll be fine', it's still a massive thing. Sometimes it's even harder when it's not a 'this must be done' decision.

If he is struggling with his feeding though then that's a good indication that something needs to be done. And there are a few mums on the Heartline board whose children are looked after at Yorkhill and have good things to say about the team there.

I know what you mean about an abuse of his good nature - I've felt exactly the same about dd in the past.