TGA - any experiences?

[NicolaSeal]

Hi all. I had my 20 week scan a couple of weeks ago and my little boy has been diagnosed with Transposition of the Great Arteries. It seems quite rare but, with heart surgery at GOSH in the first few days of his life, we've been told chances of a complete recovery are excellent. I've tried Googling but couldn't find many cases & just upset myself with other people's stories that i came across. Has anybody else been through this with their baby at all? x

Hi I don't have any experience with this but I was reading last weeks take a break mag and I'm sure there was an article in there about this, you might be able to ti on there website? The article was about 3 mums whose little boys had the syndrome. It was quite positive xx

Hi, I don't have personal experience with this but as a nurse on picu I have nursed several babies with the condition. It is a big operation and they are usually quite sick for a couple of days but in a week they are usually much better. I can't think of any babies I nursed who did not make a full recovery though some had a harder journey than others. Hope that helps, also the British heart foundation have a great website for parents of children with congenital heart defects and most hospitals have cardiac liaison nurses. You should be offered an appointment with them pre natally to prepare you, this was standard where I worked. Have a look at this leaflet if you don't already have it
www.bhf.org.uk/idoc.ashx?docid=d062dd6e-b40d-4847-9099-c37919095a6c&version=-1

My gorgeous nephew was born with transposition 19 months ago. He had one very successful op at 3 days old. He recovered well and is a very lively, healthy and happy boy! He is a real character, loves life and a very happy ending to what was a traumatic time for the family. I won't lie, the diagnosis at the scan came as a shock, it was 20 weeks of angst until his birth and the first few days were terrifying. Mostly due, to like you say, such little info. I'll speak to my sister (have been nagging her to join MN) for more advice and any websites she found helpful. If I can help in anyway, please DM me. I hope this reassures you!! If you could see the little monkey now, it would put your mind at ease!!! As a family we were in awe of the fantastic, amazing doctors and wonderful NHS treatment that little man received.

Thank you all so much for replying. I have been to Great Ormond St for a scan with consultants and am going back at 30 weeks, when I hope I can ask lots of questions. I know he'll be in the best place, but i keep upsetting myself thinking about the needles and tubes he'll have to endure. It probably sounds silly, but I hope he doesn't feel any of it and isn't wondering why I'm not cuddling him. I just can't wait to bring him home.

My nephew was so resilient, a real soldier, all the needles and constant prodding didn't phase him. He's the same now. My sister worried about bonding etc, they are best friends, have an amazing relationship, she is full of admiration of him and everything he's been through. He's her DS2 and the whole family coped so well. As the scar fades, that dreadful time becomes a distant memory!! Your touch will give him great comfort and as soon as its over, you can lavish cuddles on him. I'll try to get my sister on here, she'll be in a better position to offer you support!