Child diagnosed TGA

[Sineadandkevin]

New to the forum, not entirely sure where to place this nor are we looking advice just experiences if anyone has been through the same.

At 9 weeks scan , we were seen to have NT fluid on the babies neck, which then led to Sinéad having a CVS test that identified 22q11 Deletion syndrome. As we were meeting a specialist regarding this they identified a VSD (A hole in the heart of our baby at 14 weeks) now at 22 weeks they have found that our baby has a condition called TGA (Transposition of the Greater arteries) The Aorta and pulmonary are in reverse positions.

we were told our baby will need immediate surgery after birth.
we are just wondering if anyone has had any experience with TGA and how are children and parents coping.

any help will be great
Thank you in advance.

Hi, congratulations on your pregnancy.

Our baby was born last year with TGA after being diagnosed at 20 week scan. It’s a hard journey and the first few weeks of his life were very difficult as he had to have open heart surgery before coming home. Now though he is a ‘normal’ baby, he will need ongoing cardiac checks for life and there may be further interventions needed later down the line but overall he has a great prognosis.

Happy to answer any questions and I would also recommend you get in touch with Tiny Tickers, they run online peer support groups for parents to be who have had a pre natal cardiac diagnosis, it really helped me in my pregnancy process the diagnosis and plan for when our baby was born.

xxx

You might want to get the name removed from your post.

I hope all goes well

Hello, My eldest son was diagnosed with a complex TGA with ASD and PTO after birth. He had his first OHS at 4 days, and then had further operations at 9 days, 5 weeks and 6 weeks. He also needed ECMO.

He is now a huge, happy and healthy young man. His experience was obviously several years ago, but if I can help in any way I am here on the other end of computer.