Tetralogy of Fallot diagnosis - can anyone share their experiences?

[F13boy]

I'm hoping this is the right place to post..

We have just been told our baby has Tetralogy of Fallot, after being referred after our 20 week scan.

I've been okay, obviously it's a bit of a shock, but based on all of the information I've been given it seems like the prognosis is actually fine. However, my husband and our parents seem to be much more worried.

Has anyone else been through this? Would you be able to share your experiences?

The consultant said that currently, our babies pulmonary artery isn't overly narrow, so we'll check that again at 31 weeks. Based on that, I may have to give birth at the UCH. We'd then monitor the baby and plan surgery depending on the severity. We're lucky as we live in London, so are very close to Great Ormand Street where the consultancy and surgery take place.

Any advice would be greatly appreciated x

I stumbled across this post by accident. No experience of this, but you might get more traffic if you post this elsewhere. (I don't like to suggest chat as that seems flippant of me-but it is a busy site) Sorry that things are not as straightforward as you'd expected.