ASD / Any under 5's with hole in heart ?

[julesnyc]

DS of 20mths has an ASD(Atrial Septal Defect)Hole in the heart(quite large) Anyone out there with same condition/child with same condition ? Looking for some support if poss Thanks

Hiya.
My dd4 (6 months) has a different heart condition but I found loads of support on Heartline . I don't know if I can be of any help but feel free to chat .

was about to link to heartline too.

they are fab over there.

hi catj.

Thanks - have looked a the heartline site and very informative. Would like to hear of any parent whose child has had the Amplatzer device fitted or is waiting for one. Any personal experiences with this or the open heart surgery to close a moderate hole would be of great use to me. Thanks in advance

Hi Jules my dd has a significant heart defect. She had open heart at 4 months, but isn't 'fixed'. I'm always around on the Heartline message board.

I'm not sure if there is anyone whose had the amplazter device, but if you ring the Heartline office or the Children's Heart Federation Helpline 0808 808 5000, they'll try to find you someone. Which hospital is looking after your ds?

Hi julesnyc
My ds is almost 9mths and so far has had three surgeries for coarctation, large VSD and complete/2nd degree heart block. The first was open heart at 8 days old.

Sorry no specific experience of ASD but i know how awful the waiting is. Well done for seeking support. I know i just wanted to see a growing, happy child who'd come through the other side. Heartline will help with this i'm sure.

I would say, at the hospital, write down EVERYthing you want to know - even if, on reading it back, it seems silly - best to ask too much than forget and kick yourself afterwards. Consultants have so little time and in general aren't great at talking (who cares if they do a good job, right).

Good luck and look forward to the point at which the whole thing is just an uncomfortable memory to share with your little one later.

H x

Thank you saggar and lenny for your responses.They are very useful. Ds is under Southampton - we live only 10mins from the hospital. Where are your little ones under ? Have been told that Soton hosp is excellent - which is reassuring........

Most of the time i feel like i am over reacting as the defect CAN be fixed ! but am quite worried about the open heart surgery which is what is likely to happen in a years time. It is the long wait as well. I shall have a good look on the message boards on the heartline site and then maybe can find someone who has had the same defect . Best wishes to you and your families. Thanks so much xx

We're looked after by Birmingham, but know lots of families looked after by Southampton, and yes they are excellent. I think the waiting is probably the worst part.

I can vouch for the fact that Southampton are brilliant. So much so that I really didn't want to come back to our local hospital. Have you had much contact with them there? I found the Cardiac Liaison nurses to be a great help but all of the dr's,nurses etc are very good at explaining things.

Jules my daughter has 4+ ASDs.

She got them fixed soon after she turned five using two amplatzer devices inserted up her leg vein.

She was completley fine within a few hours of coming out of the general anaesthetic.

Her surgeon said she was the smallest kid with the biggest holes he had ever repaired using this technique.
It is nothing at all to be worried about.

Routine stuff for the cardiologists.

Hi Jules!

My youngest ds also has significant heart defects, although I have no specific experience with asd's though. I do have experience of open heart surgery though, ds was 9 months when he had severe coarctation & hypoplastic aortic arch repair.

I too was going to suggest heartline, but can see my fellow heart mums were quick off their marks, lol! Like Saggar, I am around quite alot if you ever need anything.