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Original poster

Anyone heard of Transposition of great arteries?

19 replies

FairyD · 03/12/2007 20:36

Hi, Have just been for scan at 23 wks to check babies Heart, and have discovered it is likely to have transposition of great arteries. (ie arteries attached to heart wrong way round) have been refered to specialist centre to scan again and hopefully be given some info, but am still waiting a week later. am going insane... from what i understand baby will need open heart surg within a couple of weeks of birth. Has anyone had a baby with this or know someone who has had it? really need to talk

OP posts:
2Happy · 03/12/2007 20:41

Fairy, I am so sorry for your news . My bf in RL, her brother's baby has TGA. He is just over a year old. He's doing really well. Can I help at all?

Bauble99 · 03/12/2007 20:43

My cousin's eldest DD (now 14) had this. Can you chase up the appointment?

bagpuss · 03/12/2007 20:50

Yes, ds1 has/had it. Please ask away .

Original poster
FairyD · 04/12/2007 20:52

how big a deal is it? I realise they need surgery soon after birth... and that it is major surgery but do they - well sounds awful thing to say are they 'normal'? My 1st was in special care for 3-4 days so no stranger there... did manage to get him breast feeding too. was hoping for easier ride this time! jsut wondering really what sort of impact it has, and approx how long in hosp for and if possible to breast feed at all. am being transfered to another hosp 70 miles away as local obviously can't deal with it so even logistics of do you as mum stay in the whole time? what happens to my 14 month old? does he stay with me? it's all the stupid not really important questions but the ones you can't find out by looking up the condition.

OP posts:
Original poster
FairyD · 04/12/2007 21:01

cos don't really have any family nearby so for how long will I need help for. and yes Bauble99 if no answer by lunchtime tomorrow am going to start nagging! what do you tell people when thy come along and say congratulations? I don't want to be a fraud and pretend everything is fine.... but then blurting out oh yeah everything is just peachy but she needs open heart surgery soon after coming out. I mean sad as it may seem used to love reading the baby book when I hit a new week to find out what was going on, now I can't look at it without crying, cos so worried what may happen/ if we'll get to that stage.
also do you have to have c-section?

OP posts:
Wallace · 04/12/2007 21:06

Oh sweetheart, poor you

The forums at www.heartline.org.uk are very supportive and they will be able to answer all your questions xxx

2Happy · 04/12/2007 21:16

Fairy, sounds like Bauble and Bagpuss know a lot more than I do. I know friends' nephew had an op shortly after he was born (in fact they hadn't known he had it before birth, it was a real shocker for them when he became unwell). I think it was a stent or a shunt or something? He's had I think one more op after that. Then they wanted him to be a certain weight before they would do the main replumbing op, and that's scheduled for Jan/Feb next year - so he'll be 1 and a half by then. He is a really really happy smiley kid. He has been a little slow physically but they think it's because he had some problems after one of the ops and spent a lot of time in hospital and has some catching up to do. He also has reflux. But he's normal absolutely, an absolute sweetie. I won't pretend it hasn't been difficult, but they've been really well suppported. His treatment has been at GOSH. Where are you?
I think the others can help more with their personal experience, but please, if there's even a tiny thing I can help you with, let me know x

Original poster
FairyD · 04/12/2007 21:29

thanks, it's just so nice to have replies! finding it hard to talk to people I know, I know it sounds stupid but don't want pity, just really worried about how will cope, and how 14month old will cope. based East of york but being transfered to leeds...

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bagpuss · 04/12/2007 21:41

Yes heartline are good and will give you answers I agree.

When ds1 was born we didn't know he had TGA and I had 4 long weeks of why wasn't he feeding and gaining weight etc before he was rushed to hospital and diagnosed. I did at the time have a friend in Ante-natal class whose baby had been diagnosed with a heart condition in utero and who was monitored very closely throughout her pregnancy and gave birth in a different hospital to me which was well equipped to deal with such cases.

I had a natural birth (so did my friend, actually) and ds1 was totally normal at birth apart from a degree of blueness to his hands and feet. This got worse over time and when he was diagnosed at Alder Hey the cardiologist and his team performed a stabilising procedure called a Balloon Septostomy which was done by putting a catheter into the heart and making a hole in between two upper chambers to allow the oxygenated blood to mix with the deoxygenated blood and make him pinker. After that he remained in PICU until his op (he was on a ventilator too) although many babies are well enough not to need this. ds1 spent about 2 weeks in PICU and we were encouraged to help change him and care for him.

I expressed BM for him too and although I gave up BF shortly after he was discharged I do believe that if I had had some proper support I would have carried on feeding myself. I think the key is to drink plenty as hospitals are very warm places and to express often. My supply dried up because I was in such shock that I didn't do those things.

We stayed nearby ds1 in Ronald MacDonald House which is a charity who supply rooms for parents of children who are ill in hospital. Ours was in their main building and opposite the hospital entrance. We had a pager so that we could be contacted at all times.

There are different versions of TGA so your baby might not go through the same course of events as my ds did. He had simple TGA but there are other permutations where the heart has better communication between sides and therefore the child appears more 'normal' at birth. DS1 is really well now and has thoroughly exceeded everyones expectations wrt his heart. Please feel free to ask me anything else. I'm sorry for the length of post, I'm waffling and keep thinking of things that may or may not be useful to you!

bagpuss · 04/12/2007 21:47

Ooh, sorry, cross posted with more people. My post is dreadfully longwinded but I hope in some way I can help. 2Happy, it sounds a lot like your friend's dn has Congenitally Corrected TGA? DH's bf's son also has that (bizarre and horrible coincidence).

Original poster
FairyD · 04/12/2007 21:53

oh thank you so much all really useful - am still trying to get registered with heartline - think computers misbehaving... it all looks a bit intimidating with all the medical histories of the children and what they have been through!
just wish they would hurry up and get us appointment so don't keep finding horror stories! was that 2 wks in PICU post op? v relieved to hear there is a chance of BF - it's sort of feels you can contribute a bit..

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Original poster
FairyD · 04/12/2007 22:13

Oh don't apologise for length- it's fab getting loads of info presumably although most severe, also simplest to operate if simple TGA? I think dr said no VSDs so sort of hoping it's similar. was ds1 early? some of the web sites have been suggesting they can come early? how long was the Op? once out of hosp did catch up with others in antenatal class? sorry questions prob all seem a bit random, it's what i can pick out of the wirling haze! at least she's just started kicking again. always get a bit nervous when she's still.... thanks will have to go to bed shortly as working early, but if think of anything else - everything has been interesting so far! and back by lunch to read it!

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bagpuss · 04/12/2007 22:21

Yes I think it was 2 weeks post op but ds1's case went very smoothly, some families I knew at the time had been in for slightly longer. I don't post on heartline as ds1 isn't in hospital at all apart from check ups but we do get the newsletters which are very helpful.

bagpuss · 04/12/2007 22:32

Technically I'm not sure it is exactly simple but yes I know what you mean, it is a more straightforward type of procedure (Arterial Switch). DS1 came on his due date and op was approx 8 hours long. I did manage to get back into seeing my antenatal crowd after about a week of being home and ds had all his vaccinations etc at about the right time. You may be given some drugs to administer at home (We had spironalactone and frusemide) for a while. If I think of anything else pertinent I'll post tomorrow. Off to bed now. I hope you and baby are both well .

Original poster
FairyD · 04/12/2007 22:36

Thank you so much - feeling so much better! Have good sleep :0

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Original poster
FairyD · 04/12/2007 22:37

oops - meant

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2Happy · 06/12/2007 14:53

Bagpuss - congenitally corrected TGA?? I have no idea!! But I know his TGA is complicated by some problem with the arteries which supply the heart muscle... don't know much more, but with all of those problems, he's still thriving, which, Fairy, is the most important thing I think I can tell you. I hope you get your scan soon x

Original poster
FairyD · 06/12/2007 20:21

tried the consultant's secretary who did first scan and refered me today - no answer of course! will nag more tommorrow. unfortunately was not really concentrating and only heard where he was refering me to not who! bit thick really as could then start nagging them direct. do remember him saying it would take a couple of weeks but hey why not start getting practice of nagging in! please god it's before xmas! got a lot of info from some of the heartline mum's... they are amazingly positive - actually reminds you that you'll get a lovely little girl at the end...

OP posts:
Wallace · 07/12/2007 05:45

Hope you get an answer today. The more you nag, the more likely you might get a cancellation?

Good luck xx

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