Expectant parents with a CHD baby - help

[ChrisOR7]

Me and my wife are expecting our first child and at the 20 week scan we discovered that she has a hypoplastic aortic arch with associated VSD and as such will require open heart surgery soon after birth. I'm looking to speak with other parents who've dealt with a similar diagnosis to see what we can expect/day to day life with this condition and what to expect from the surgery. The doctors have said following successful surgery we can expect her to live a relatively normal life which is great news. However, I'm still reeling from the diagnosis (no family history either side of something like this). As such, I thought it would help me come to terms with the condition speaking to people who've dealt with a similar diagnosis. Thanks in advance

[Milkfairy Heart Star]

Hello,Welcome to the Forum.

Most of the members here are individuals with a heart condition rather than parents of a to be born baby with a structural heart problem.

It must have been such a shock to have been told your baby will need heart surgery so soon after birth.

There are a few charities and support groups for parents in your situation where you hopefully can make contact with other parents.

tinytickers.org/

[Milkfairy Heart Star in reply to Milkfairy]

Also chfed.org.uk/

[MichaelJH Heart Star]

Hello... I would suggest ringing the BHF nurses on 0300 330 3311, open weekdays 9am - 5pm for a chat. They may be able to recommend support organisations. Many hospitals have their own support groups but unfortunately many are inactive in the Covid era.

[HeyAJ]

Hello, my baby had a diagnosis at our 20 week scan as well back in Aug last year (several issues were found including a large VSD, DORV & TGA). I realise your post was 6 months ago now - how are things going for you?Our daughter needed a minor surgery at 2 weeks old to relieve her symptoms and we're now trying to get her at the ideal weight for her full heart repair.