pregnancy and Tetralogy of Fallot

[Fluffpuff]

Has anyone on this site had a successful pregnancy with the congenital heart disease called Tetralogy of Fallot? I would appreciate any information or advice.

My friends youngest was born with this. Worryingly it wasn't picked up on scans and it was incredibly scary.

After a few scary surgeries; that little one is now 5 and thriving.

It does require several surgeries but I believe the outcomes are good.

I was born with it...it wasn't even picked up until I was over a year old. Two corrective surgeries and a more minor stent later, I am very much fit and well in my late twenties. Cardiovascular medicine has come leaps and bounds in recent decades.

Hi. Yes, my best friends daughter was born with it, not picked up on scan. Operated on and is a healthy, cheeky 6 year old with oodles of energy!

Op, do you have the heart defect, or your baby, it isn’t clear from your Post.

I would assume that is what the OP is implying.

If you mean the fetus having ToF then as far as I am aware the success rate for corrective surgery is in the 90% bracket.
Obviously there can be syndromes and other additional CHD along side or other malformations associated with this, but you will be highly monitored by a specialist consultant with extra scanning offered until just before birth.

If it's you that has Fallots get yourself over to The Somerville Heart Foundation: the charity for young people and adults born with congenital heart disease.
Somerville Heart Foundation
Are you under a specialist adult congenital heart team?

If it's your baby: the oldest Fallots patients I know personally are over 70 now, if that helps.

Hi thanks for all your replies. It’s my 33ye daughter who has fallots and wants to try and have a baby. Just wondered if anyone in this site has had a baby or knows of anyone who has had a baby whilst having the condition themselves.

Thank you for your reply. It’s my 33 yr old daughter who has the condition and wants to try for a baby.

She needs to talk to her cardiologist before she starts trying to conceive. When is her next appt? Cardiologist will give her an appraisal of the risks and might refer her to a maternal medicine consultant.

Absolutely impossible for anyone here to give you anything other than anecdote, ToF can be very variable in its severity

It’s my 33 yr old daughter who has the condition and wants to try for a baby.

She’s trying to get an appointment but there is quite a wait at the moment.

I don't mean a new appointment, I mean mention it at her next routine appt. Patients with ToF are never discharged from cardiology follow-up.

Well yeah, but if the next one is 18m off she'll want one sooner.

@Fluffpuff - the Somerville Heart Foundation (link above) has leaflets on TOF and on pregnancy in ACHD. Your daughter will need to register on the website for access but it's free. There's also a very supportive and active Facebook group, plus another group not officially affiliated about pregnancy and parenting with ACHD.

should be under annual follow-up as a minimum. it's possible she missed an appt during covid and was discharged?

I was born with it and had total correction in 1975. I was 18 months. I have 3 children.

A childhood friend of mine had ToF and went on to have three kids. I wasn’t in touch with her during her pregnancies but she’s 50 now and fit and healthy.

@WakeMeUpInspring Maybe you’re the person I’m thinking of!

Ha! I was just going to post the same. I'm nearly 50 😉

If your initials are AW, then we know each other 😀.

Blimey. We do

Hahaha!

Mental 😂