Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Heart problem in baby discovered in pregnancy. Anyone any experience/advice?

13 replies

farfaraway · 27/04/2007 22:32

Not sure whether to post this under Pregnancy or here in Health. Am currently pregnant with DC3 and told about a month ago in 22 week scan baby has a congential heart problem called a TGA (transposition of great arteries). Now having a very worrying pregnancy and fearful about the birth and following operations. Anyone any experience of this? Also am in France so would be pleased to hear from anyone who has given birth at Necker, Paris.

OP posts:
misdee · 27/04/2007 22:35

not been through it myself, but there is a fab website for parents of herat children

www.heartline.org.uk

farfaraway · 27/04/2007 22:39

Many thanks. Will have a look now.

OP posts:
Saggarmakersbottomknocker · 27/04/2007 22:44

farfaraway - My dd has a significant congenital heart defect although not discovered pre-natally. I'm on the message board at Heartline. There are quite a few mums over there with children ith TGA, please drop by.

farfaraway · 27/04/2007 23:23

Thanks again. Have been looking at the message board discussions and am browsing through at moment. Feel a bit daunted and sad by what some children/parents seem to be going through - Seems many children have more than one condition I have so little info at the moment so thanks for the link.

OP posts:
Heartmum2Jamie · 28/04/2007 00:02

Hi there! I am another fellow "Heartliner" who lurkers around on mumsnet too! My son was discovered to have a significant heart defect as well, but like Saggar, not antenatally. Please do drop by, you will get lots of advice/suppot there!

Heartmum2Jamie · 28/04/2007 00:10

Oh, I meant to say, it is very hard to not feel daunted when you first read the boards, especially when you are so new to this whole new world, feeling like you are not sure which way is up. I can assure you that for anything sad that you read, there are as many and more happy posts, we are lucky in a way that we see joy and happiness in the smallest things that many others might just take for granted. As for some children having more than one condition, it makes no odds to us if it is something as "simple" as a small hole, to only having half a working heart, the feelings and worries are just the same, so please don't worry about that. They are a great bunch and would make you and your baby very welcome.

eidsvold · 28/04/2007 00:35

MY almost 5yo dd1 was diagnosed antenatally with a congenital heart defect - she had a complete Atrial Ventricular Septal defect - AVSD and a dodgy av valve.

IT was a very scary time - we did a lot of research so we knew what we were dealing with - found it especially helpful hearing from other parents about their experiences.

THe positive in knowing antenatally is that everything was in place in terms of dd1's post birth care. We toured the special care/icu unit at our local hospital where dd1 was born, we already had the referrals to the London hospital that did her cardiac surgery etc. So what would have been a worrying time post natally wasn't - so much was in place that we felt okay about it all - iyswim.

Dd1 had surgery at the Royal Brompton when she was 8 weeks old. Since then she has not looked back - she is an amazingly healthy little girl. Whilst her av valve is still slightly leaky and may mean surgery as a teen or later if the valve needs further repair - she just has annual check ups at this stage.

It can be a very worrying time but I felt knowing what was to happen and I also had more specialised care which helped ease my fears. FOr us researching and informing ourselves of what was ahead was also very helpful.

Despite having a heart defect - I had the opportunity to have a vaginal birth - did not work out that way - other factors to do with me meant I had an emergency c-section. So I can't imagine how dh and I would have coped if we did not know and she was rushed to ICU etc on top of an emergency section.

Talk toy our consultants - ask all the questions you can think of - no matter how silly or small they seem.

Heartline were also helpful for us to refer to.

HTH

Saggarmakersbottomknocker · 28/04/2007 09:43

Hi farfaraway, can I just second Heartmums lovely post (hiya ). The Heartline board is very busy and sometimes very sad and I can imagine that is pretty scary. On the other hand there is lots of happiness too, the support is fab and the wealth of knowledge boundless. A short 'hello' post will bring it all out.

There is so much info out there and quite often it's out of date as surgery and medications are moving on so quickly.

There's a simple explanation of TGA here and here
If you'd like a more medical site the info on www.emedicine.com is excellent; very straightforward and up to date. I can link it if you'd like.

My dd is my third and the one with the heart problems, we had such a bleak prognosis but check her out on my profile. She did great

Thinking of you - I hope you can manage to enjoy he rest of your pregnancy. Post on Heartline when you're ready otherwise bump this one if you have any questions and I'm sure one of us will be able to help.

Take care.

farfaraway · 28/04/2007 12:16

Wow, so I am not alone then. Thanks for all your replies. Saggar, those websites are great and explain it very simply. So far all the info I have been provided with has been in French (not my strong point) or very technical from the internet. But for me it feels a little difficult to enjoy the pregnany now. All the anticipation and joy of impending birth (July) has gone and replaced with worry. I know it will be a c section (my 3rd) and baby will be taken away pretty much straight away for the balloon procedure - and this is getting to me because all those essential bonding moments after birth will not happen now as I will only get to see baby when I can get up the next day.

Operation is planned by the end of week one and hope it is straightforward and easy. Cardio doc I saw last week pointed out all the complicatons (very french style) and mentioned more scans to check the condition of the valves again before birth and I came out feeling worse than when I went in.

Good to hear your story Eidsvold - think you may be right in that hearing other parent's experiences is especially helpful - your story is the first really! At the moment I do not feel we have asked enough questions to consultant as we just felt as if knocked over the head by the news and in a bit of denial really. But our consultant did say that the baby would yearly check ups during childhood and two yearly as an adult. Have you been told this too as I was completely thrown by thought of baby still affected by this as an adult when I am long gone..

HM2J - will join the bulletin board later and check out your stories. thanks for your support.

OP posts:
eidsvold · 29/04/2007 22:48

farfaraway - my dd1 was taken straight from me and rushed to ICU - dh managed a very quick cuddle..... I got to see her that day - wheeled my bed down( had a c-section) got to touch her the next day - think it was a couple of days before I got to actually cuddle and hold her. No problems with bonding here. Just made sure I was involved in her care as much as I could be.

misdee · 29/04/2007 22:53

there is a special hold in SCBU, hands on head and bum, whilst in incubater, liek a very special cuddle for babies who cant be picked up for whatever reason. cant remember what its called.

eidsvold · 30/04/2007 06:26

don't remember either misdee but we used it - best though was when we could do kangaroo care - loved shoving her down my shirt.

ra29 · 07/05/2008 23:20

Hiya,
Just to say I have a lovely healthy 11 year old ds who was born with TGA. (I'm also on heartline occasionally) . In all honesty seeing my son in intensive care was probably the worst experience of my life and you'll need lots of support BUT most TGA babies do really well and it won't be long hopefully before you're marvelling at your little baby and enjoying the 'normal' things just that extra bit more. Be kind to yourself -ofcourse news like this is going to change your pregnancy- it's news nobody ever wants to hear but you will manage- just take it day by day.
Feel free to ask me anything.

New posts on this thread. Refresh page
Swipe left for the next trending thread