ASD (atrial septal defect)

[blossombottom]

Hi all,

DD has just been diagnosed with this at 5 months. It was a routine echo related to something different so this has come as quite a shock, though am reading around the subject and I gather that this shouldn't really affect her in childhood- and it's fixable.

Am interested to hear others' experiences with this. The doctor said the hole was larger than she'd like it to be for her age (whatever that means) and said we'll get a consultant follow up in 4-6 weeks to discuss and I guess make a plan. She gave me the impression that the hole could close over but probably won't, and would probably need surgery (she mentioned the catheter procedure) when DD is a few years old. Aghh...

Just feeling a bit fragile and scared despite all the positive things I've read!

Oh OP. Massive hugs (sorry i know this is MN!). Ive been there and I know how you must be feeling. Its a very scary thing to hear. My son is 13 now and had his ASD picked up at birth. He had an oxygen requirement for a few weeks following birth and they found it while checking to see why.

As I'm sure you know, all babies have it pre birth but it should close when they are born. And yes, its perfectly possible it can still close on its own in the next few weeks/months. DS's didn't. He had it closed with a balloon type device when he was 5, via catheter, day surgery. A very simple operation (but obviously scary for us!).

Tbh, it didnt really cause him many problems before closure. He was quite small for his age and struggled to gain weight a bit. Got tired easier than other children. But nothing too serious really - it sounds worse than it was.

Having said that, most people apparently live most of their lives not even knowing they've got an ASD, so its also very possible to have no issues at all.

Sorry that was a bit waffly! Let me know if you want any more info. Or a hand hold. Its a tough time but it will be ok.

You're so kind to reply, thank you! This was just what I wanted to hear really. The registrar who delivered the diagnosis was reasonably helpful but I wish she had given me more context as I was too stunned at the time to think of all the questions I should've asked...

So glad to hear your DS is well. I think this is one of those things that sounds scarier than it is in realty.

My son had ASD diagnosed at a few days old. He attended the cardiac consultant until he was 6 when the hole finally closed. Before that I could hear it if I put my ear to his chest!

He's 17 now and absolutely fine and suffered no effects while the ASD was there.

That's amazing Kermit. How often was he seen by cardio? Presumably he had an echo each time? Did they always think it would close by itself?

Hi, Sorry to hear this and hope you are feeling a bit better after the shock. My DD has a repaired ASD, which was discovered when she was in hospital with a chest infection age 1. They repaired it by a catheter and it really was a very minor feeling op. She's had lots of ops and I can honestly say that the ASD one was the easiest for her. She was only in hospital 1 night and recovered from it really well and super quickly. There was a risk that the hole would have been too big or too awkward to close in that way, so they then would have needed to do an open heart op. I think that it's relatively rare that they have to go down that path though. I joined the charity 'heartline' at the time and they were very supportive. I hope your DD's proves to close of its own accord though and also hope this reassures you in some way.

What a worrying time. My son had a VSD, which is similar to an ASD, but is a hole between the heart chambers. His hole was very big and it was discovered when he was a few days old. He ended up having open heart surgery at 6 weeks as he was too small to have the catheter operation.

He's now 2,5 and doing great.

I think ASDs cause fewer problems than a VSD, due to location and the hole might get smaller as she grows. She'll be monitored well and if an intervention is needed, it'll be a routine operation and recovery should be quick.

Thank you foxy - gosh, open heart surgery at 6 weeks must've been a lot to get your head around.

All your responses have really really helped me get this thing into perspective; thank you all so much.