baby heart surgery

[sarahvac]

Our 4 month old baby daughter, Rosa, has just been diagnosed with AVSD - a heart defect which will require surgery before she reaches one. At this stage we feel we know very little and would love to talk to anyone with experience of this condition. Thanks

Poor you (and DH/DP and DD). This must be a difficult time for you all. Did you have any idea there was a problem before now?
I have some experience of this from work. Do you know if it's a partial or complete AVSD? This makes some difference to what the surgery involves.
Which hospital are you going to?

sarahvac - my dd has a significant heart problem - I post on a message board at Heartline . There are some mums there whose children have AVSD. Please pop in.

Thanks both of you. We knew she had a heart murmur from her 6 week check up - but so many people told us it would probably be nothing we'd almost become blase - but not any longer. It's apparently between partial and complete - but more on the complete side - I don't really understand the difference as yet - feel as if I have an awful lot to learn. We are going to the John Radcliffe in Oxford - any thoughts on this gratefully received. I'll be going on that Hearline site - so thanks for that. Sarah

Hi. My dd4 has a heart condition (although it is different to your dd's). I also occasionally post on Heartline (under a different name),but I just want to add my support (dd4 had surgery last year,first one at the age of 3 weeks)

Look forward to seeing you there Sarah - I'll give you a shout under my proper name lol! I agree, it's a steep learning curve, but the girls will give you loads of support.

Hello - slownorris - how's your lovely dd4 getting along?

hi sarah, my dd2 was born with a v. large VSD & PDA, the effect and the surgery are very similar to AVSD. She had the OHS at 7 weeks old and is completely fine now.
Dd2 was born with Down's syndrome and the heart defects - we had no idea beforehand and it was all a terrible shock, she was in hear failure v. early on and it was really difficult coming to terms with it all.
She had a bit of a crappy time post-surgery, but that was largely due to her being in poor shape when she had it done and still being so tiny - I believe the vast majority of babies recover quickly. Anyhow, she is 5 now and her heart is as good as a normal one.
Is there a HeartLine support group near you? They might be able to provide you with a localtelephone contact whose child also had an AVSD repair.
Anyway, good luck and keep us posted.

Are you already deluged with more information than you can possible take in? If not, this explanation looks OK. avsd info
It is all a lot to take in.

I think, essentially:
Partial AVSD means a hole in the atrial septum (the bit between the top two chambers) and relatively mild problems with one of the heart valves
Complete AVSD usually means a hole in the atrial septum, a hole in the ventricular septum (the bit between the bottom two chambers) and much more significant valve abnormalities, with one common valve between the atrial and ventricles where there should be two
In intermediate AVSD there is typically (though not always) a hole in both the top and bottom parts of the heart (an atrial septal defect or ASD and a ventriular septal defect or VSD). However, the valve problems are not as severe as those seen in complete AVSD.

Actually, just looked back at that link, not sure if it's all that good.

I'm in London, no experience of the John Radcliffe. But if there's any medical jargon you need deciphered, please ask and I'll try and make sense of it.

bumping this for eidsvold - her dd1 was born with an AVSD and is hapy and healthy now.

happy even!