congenital heart disease in children under 5 yrs

[curfly]

just wondering if anyone has a child with congenital heart disease?
How the older siblings react in the family and what is the cardiac diagnosis is. Hope to hear from somebody.

not as far as we know, tho my kids will be screened for DCM at some point in their lives. dd3 (who is 6months old) had several scans on her heart before she was born. thin ka small hole was detected but not been re-checked yet.

heartline is a good forum for parents/carers of children with heart problems.

Dd1 was born with a pulmonary stenosis and an atrial septal defect, but she was given the final all clear when she was 8, although she still has a slight murmur.

My cousin was born apparently OK, but ahd a heart attack at 24 hours old, at home. he had major hert failure from abnormalities and they were advised to let him go, but they arranged to move him to Birmingham (he was in Bristol at the time, not long after the heart scandal, and they had been warned- don't know if it was fair or not- that Bristol would do anything to avoid performing risky heart surgery. Birmingham operated, and saved his life, he was told he would need a transplant at about 14 and in the meantime had to have lots of relatively minor ops. Unfortunately his heart failed more quickly than suspected, and during a minor op just after his sixth Bday he didn't regain consciousness, then he contracted an infection and died. It was terrible, but they did get six years they almost didn't have with him. And I guess it was relatively quick, he wasn't in a chair for ages waiting to see if a transplant happened- that would have been awful too.

As for the family, the other kids were so loving towards him it was incredible. He was one of three from that marriage, plus another sibling added by each parent as the parents broke up when he was 4. They've had a lot of problems as a family, but they keep each other strong.

Thank you misdee for the heartline link, will have a good look at it thank you, have the aust.vers. of heart children.

Dd was born with a VSD, and we were told it was a very small hole and she would never need surgery. However when she was 7 months old we saw a proper paediatric cardiologist and she detected signs that dd's heart was working harder than it should, so she needed a cardiac catheter to investigate further.

She had the catheter when she was 10 months old, and this showed that far to much blood was being pumped to her lungs, and this would cause irreversable damage by the time she was two. She was put on the waiting list for surgery, and 7 months later had very suceesful and straightforward surgery to repair the hole. She is now 4, and is doing very well

Curfly - hi.

My dd has significant congenital heart disease dx'd at 14 weeks after a collapse. I have two boys who were 5 and 2 at the time. It was very tough at first as dd spent a long time in PICU and I had to live away from home as the hospital wasn't our local. Dd has restrictions and our life hasn't been what I thought it would be, not awful, just different. It was difficult for the boys at first as they were so young. The children are now 17,14 and 11.

I post regularly on the Heartline message board and it's been a lifeline for me. Pop in over there and say hi. You can CAT me if you need to chat.