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Babies with CHD

(7 Posts)
bechvrs Thu 21-Jan-16 11:34:37

Hi all!

I am currently 32 weeks pregnant, expecting a little boy who unfortunately has been diagnosed with Transposition of the Great Arteries, which is a congenital heart disease.

We were lucky enough that it was discovered at his 20 week scan as I've read a lot of stories about parents not knowing until birth. I've had time to make my peace with it + am very hopeful for my little bubs future.

I just wanted to know if there were any other pregnant ladies going through the same or mothers who have had babies born with either TGA or another CHD. Mainly I just wanted some support, advice + info on what to expect?

I have a meeting with GOSH/UCH being arranged for the upcoming weeks but would love any other input anyone can offer for reassurance. Also, freaking out a little about birthing plans + what to take to hospital - I know the info will be given to me but opinions + experience would also be very helpful.

Thank youuuuuu!!! smile

NK346f2849X127d8bca260 Thu 21-Jan-16 12:21:54

If you are on Facebook Patches heart group is really good.
If not have lots of info and a forum.
My daughter is under cardiology at GOSH.

Is your little boy going to need surgery shortly after birth?

bchvrs Thu 21-Jan-16 18:20:13

Ooooo thank you very much I will take a look at both now!

I assume you have been to the CICU then? How have you found the care at GOSH if you don't mind me asking? smile

Yes, within the first week or so he'll have an arterial switch operation at GOSH!

NK346f2849X127d8bca260 Thu 21-Jan-16 19:16:25

The group on Facebook is Patches heart group members....the group is very supportive and there will be other members with the same heart condition as your little boy.
I have been very impressed with the care my daughter has had at GOSH, at the moment we are in the wait and see how it goes stage, but she will need surgery in the future.
My son has acquired heart disease because he had Kawasaki disease and he has been on a research project at GOSH and again their cardiologists were fantastic.
Look forward to seeing you on the Facebook page! You will be made very welcome.

bchvrs Fri 22-Jan-16 07:03:07

Thank you, I have sent a request + am waiting to receive an inbox from the admin before they accept me! Struggling to find any other websites or ladies on forums who have experience with CHD, this group will hopefully be a godsend!

I'm glad you've received excellent care so far, it took me a while to build up the courage to even look at TGA on the NHS website or visit the GOSH site but I am so glad I did. Know it is the best children's hospital we could possibly ask for + feel in safe hands, just anxious for the meeting now to find out how everything will pan out when the time comes.

I am also very sorry for what your children have to deal with, it's absolutely heartbreaking + us mummies definitely need the support. Thank you again, see you on the Facebook group!!

NK346f2849X127d8bca260 Fri 22-Jan-16 08:00:11

It really is the best group I have found, lots of info from the other mums and it is a busy so any questions I have posted have always been answered quickly.
There will definitely be other mums who have had babies with TGA.
It is a shock when you first find out your baby has a heart defect, but with info and support it gets easier.
If you find your request is taking a long time to get accepted you can, if you want, PM me your Facebook name and I can tag admin for you.

bchvrs Fri 22-Jan-16 19:38:06

Lovely, sounds like just what I need, thank you again for the information. Will definitely be very helpful in regards to some questions I have that I can't find the answers to elsewhere, that really need personal experience.

The initial realisation that you can't always protect + take care of your little ones is difficult to come to terms with. Just amazing we can have such strong little miracles.

That would be lovely thank you but I'm using the mumsnet talk app currently + I'm not sure if you can/how to PM on it?!

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