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[lisak79]

Hi all . My daughter Tiana was born 16th december 2007 . At our post-natal check it was discovered she had a heart murmur and at 10 weeks was found to have 2 major heart defects called Alcapa and mittral valve regurgitation ,Tiana was sent straight down to Great Ormond Street Hospital in march and spent 5 weeks there but in total has spent 3 months in hospital and finally came home thursday last week and is doing well. Has anyone else's baby had these?
To see Tiana's full story go to www.bravetiana.co.uk

Thanks

She sounds like a real fighter and I haven't got a similar experience, as my son does have a heart murmur and is under Great Ormond St but so far hasn't needed surgery. He's autistic as well though, so the visits to GOS were awful as he couldn't be told what's going on and would scream and try to tear off the ECG thingies. You have been through so much with your little girl and I wish you all the luck in the world and a speedy continuing recovery to Tiana!

Thanks hun . appreciate it. It's fantastic having her home again after so long

Lisa - OMG fancy finding someone else here! My dd has ALCAPA among some other things. dd is 14 now - I've just started blogging her story - it's here. Bit of a work in progress at the moment. Hope you're feeling OK now you're home - it's a bit of a shock isn't it? We spent a long time in hospital post surgery too.

ALCAPA is a really rare defect as I'm sure you've found, but I post quite a bit on the message board atHeartline where there are another couple of parents of children with ALCAPA. If you sign up on that board I can contact you properly. I'm still on the hunt for a child older than dd with this particular defect so if ever you find one let me know. Hope to hear more about Tiana.

Welcome to Mumsnet.

erm- Saggar- check your link me dear!

OOer missus. Ta muchly lol!

Tis here

That could have been grim couldn't it?

Well, I was a little surprised when I first clicked
But each to her own!

You're a lost cause Fio