Heart kids? anyone else...

Ok, so, have finally decided to findout who else here has a child with a heart defect, i think i vaguely remember when we found out last year about Paris's that some people came out of the woodwork. I found out today that the little boy we know through daycare has the same thing as Paris. I knew his dad is chairperson for heart children here but I never knew exactly what is was that the boy had till i was talking to his mum today, it was finally nice to find someone else who knows exactly the stuff we do. She said exactly the same thing.. that he gets tired quicker, sick very fast and tends to just metabolise food quickly therefore isn't terribly heavy. It felt like i had said it myself.

Have just realised how much in deinal i have been about it now that i have actually done some more reading up on the condition. Argh, i wish i hadn't but then it's good (or not) to know what's ahead for her.

So.. who else on here has a baby/child with a heart condition?

Edited by mum2paris

I'll start off by saying I don't have a child with a heart condition but I do know one, he is thirteen and my daughters friends brother and I have known the family for about 8 years now. Lewis is doing fine but as you said he gets tired fast and he is pretty thin. But all in all he is a great kid and last year he got to go on a trip to Disneyland with Koru Care.
My daughter has an auto immune disease (not that that is the same as having a heart condition. So all I can say is support groups are invaluable, I couldn't have coped at the beginning without other parents to talk to. They are a wealth of knowledge and often tell you more than the Dr's do.
One thing I found out after a few years was that Natasha was entitled to her own community services card for Dr's and Prescription's and also we are able to get a disability allowance which is not income tested. It's not huge but helps pay for the trips to hospital and car parking etc.
Big hugs to you all, it's so not fare that kids get sick like this.

Hi M2P
Olivia has Pulomary Stentosis as well as the same Pulmonary Valve having a deformity, which causes the blood to swirl funny and a small hole in the underside of hear heart.
I was told that it shouldn't effect her unless she has aspirations of wanting to become an astronaut or a deep sea diver Olivia is all GO GO GO!! She did have initial problems with weight (although she had initial probs with reflux as well) but now she has arse and thighs that could crush rocks
Olivia is also involved in a local Heart Kids which is great, they have a lot of freebies and support.
I'm happy to yarn with you anytime you want so feel free to PM me.

It's the flaps and valve shape that are malformed on Olivia's Pulmonary Valve which make the blood swirl funny. I remember Jeremy whats-his-name (the paediatrician-heart specialist and ultrasound scanner) saying that Olivia's heart does work harder but not by much. She loses no blood through the posterior hole.