Tetralogy of Fallot diagnosis

[F13boy]

Posting this here as not sure if the original thread was relevant...

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

Hi my DC has Congential heart disease but not TOF. 2 surgeries on they are fine. I know of 2 children with TOF and they are fine post surgery apart from one having meds and the other maybe needing intervention in the mean time. The cardiac liaison nurses should be able to give you at tour of the ward etc and explain more if they are at your hospital. Also heartlink are a really good support I would say although it's hard, try and enjoy you pregnancy and the newborn days as they go by so quick, I spent too mph time anxious and stressed and not enjoying the best bits. Hope it al goes well for you

Thanks - that is quite reassuring to hear.

I think my concern is now having to explain/reassure our friends/family.

There are small booklets that explain know heart issues with diagrams and information, we used these and just explained we wouldn't know more till nearer the time but would keep them posted. I was very firm with with people who would bring it up every time, I just said that until birth there is nothing to be done so let's just enjoy the
Pregnancy and be excited etc not so negative

The booklets are BHF and usually on the ward but you can request them I think.

My step son had heart surgery when he was a baby (aortic stenosis and ASD/hole in the heart), the baby in the bed next to him at Alderhey children's hospital had had surgery for TOF. When DSS was 14 he moved schools, and lo and behold he was in the same class! They are now both strapping 19 year old adults!

My child has different heart issues but the British heart foundation booklets are excellent for information about different conditions. Heartline was a great source of support. The surgeons and consultants we had were fantastic. All the best.

This is all really great to hear - thank you :) I'll definitely see if I can get some of the booklets mentioned.
I think I'll just refrain from telling everyone about it for now. Will probably be easier for us that way.

My younger sister has worked in a ward specializing in correction of this defect. She told me early in pregnancy that it's one of the few defects she considers truly not a very big deal, and the correction of it goes relatively easy on the patients she's seen.

Heart line charity do a great info booklet. My son has congenital heart defects and they were a big support. We didn't find out until he was born so it a was a big shock. Having time to prepare your self and plan delivery is a good thing. Good luck

I have a similar congenital heart defect (not TOF but like TOF, classified as 'moderate' rather than mild or severe). I am now in my forties, have 3 kids and a completely normal life. I attend an adult congenital heart clinic every 2 years for a complete review, and the Professor mentioned last time that there are more adults than children these days with congenital heart disease, as so much more can be done nowadays. As a PP mentioned, TOF can be treated. Best of luck to you and your baby

Hi. I'm a cardiac nurse and have nurses a fair few babies with TOF. It is one of the better heart conditions to have iyswim. Especially as u say the Pa isn't very narrow. Booklets r def a good idea. Xx