heart defects

[leelo]

my little girl who is now 5 was diagnosed with two holes in the heart and narrowing of blood vessels before birth. she was thankfully operated on at 4mths fixing her completely. but ever since i have been unable to treat her as normal as i keep thinking she is so breakable. anyone able to relate?

Me... my DD has had 3 heart operations and although she is now fixed I do follow her everywhere and constantly have a close eye on her. I'm sure my friends think I'm crazy because I don't let her play upstairs for example without an adult around or go on trampolines.

Have you ever posted on the message boards at www.heartline.org.uk ?

We are having a party on the 26th of June at Wetlands in London for families whose children have or had heart conditions. We would love to meet you!

Hi, my son still has his heart condition. He's 9 years old and has had 2 ops so far. I still treat him as breakable at times, though am learning to let go. He also has a number of disabilities which add to his heart stresses which worry me, though when it comes to playing, thats fine though he's not very mobile lol.
Sorry feel like i'm rambling. Take care x

Hi
I'm currently 15 weeks pregnant and we were given a high chance of chromosome or heart problems at the first scan due to a cyst on the baby's neck. We've got the all clear on the chromosomes so am waiting for the 20 weeks scan to check the heart. Can anyone offer me any advice on what they may be checking for and how to cope if something does come up?
Thanks so much x

My dd 7 is very fortunate that her heart condition (large VSD) was fixed at 4 months. Since she recovered (quickly) from her surgery, I have treated her as normal. The same as her younger brother who was born without any health issues.

Her next heart scan is due when she is 11 and if that is fine, will be completely discharged from the care of the excellent hospital (Guys & St Thomas, London).

Jewel, my dd had cysts detected in her brain at 13 weeks which was a marker for chromosomal defects, eliminated by CVS. But she continued to show different abnormalities from regular antenatal scans right up till birth. Even then, they did not really know what was wrong (or not) with her, save we knew she had a heart defect. Needless to say, it was stressful and emotionally draining to hear a different diagnosis after each scan (every 2-3 weeks).

Where do you live? I would say not sonographers are not equal and their training and the quality of the machines they are using makes a big difference. It is possible to detect heart problems before the 20 week scan - perhaps they are not too worried to leave it until then? Otherwise, I'd be asking for more regular scans even before that date.

Hi Blueshoes

Thanks for the advice. I went for a 17 week scan 2 weeks ago but the sonographer said the position of the baby meant they couldn't see the heart.

We're under the fetal medicine unit so its the specialist there who is doing the 20 week scan (in one weeks time..eek).

Every scan so far has been absolutely fine apart from the cystic hygroma which was measured at 3.6mm at 14 weeks and the same at 17 weeks. Was there any change in the cysts during your scans or was there changes in the baby?

Thanks so much for your advice it's nice to know that I'm not alone in all this...