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Original poster

pregnancy and Tetralogy of Fallot

34 replies

Fluffpuff · 17/03/2023 15:30

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.

OP posts:
Original poster
Fluffpuff · 19/03/2023 22:06

Thank you that’s good to know.

OP posts:
Original poster
Fluffpuff · 19/03/2023 22:13

That’s reassuring to know.

OP posts:
jigsaw234 · 20/03/2023 06:30

But just on a more general point OP, if your daughter isn't on an ongoing basis under the care of a cardiologist with expertise in this area (they call them grown-up congenital heart disease clinics) then something has gone wrong as these patients should be under lifelong annual specialist review.

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Original poster
Fluffpuff · 20/03/2023 11:25

she was last seen in 2021 and before that she but it’s been a bit of struggle to get face to face ongoing care because of covid, however, she has managed to talk to someone at st Bart’s about having some up to date tests so just hoping the wait is not too long 🙏

OP posts:
HappyHolidai · 20/03/2023 17:29

Sympathy, @Fluffpuff - Barts seems to be struggling to keep up but good that she has managed to speak to someone there.

@jigsaw234 thankfully it's no longer the 1970s and the name has settled on Adult Congenital Heart (rather than "grown up" (yuk!)). Makes more sense now increasing numbers of patients are actually older than their cardiologists! Anyway, good point obviously about needing to see the right people. Crucial.

jigsaw234 · 20/03/2023 18:45

HappyHolidai · 20/03/2023 17:29

Sympathy, @Fluffpuff - Barts seems to be struggling to keep up but good that she has managed to speak to someone there.

@jigsaw234 thankfully it's no longer the 1970s and the name has settled on Adult Congenital Heart (rather than "grown up" (yuk!)). Makes more sense now increasing numbers of patients are actually older than their cardiologists! Anyway, good point obviously about needing to see the right people. Crucial.

Yes clearly no-one uses the term grown up congenital heart disease......

www.bartshealth.nhs.uk/guch

www.networks.nhs.uk/nhs-networks/shropshire-and-staffordshire-heart-and-stroke/cardiac-heart-information/grown-up-congenital-heart-disease-guch

OP - glad she is getting sorted.

HappyHolidai · 21/03/2023 07:47

@jigsaw234 they need to get with the programme, like everyone else!

jigsaw234 · 21/03/2023 22:03

I'm sure GUCH is the older term but I was just pointing out that it wasn't an unreasonable term for me to have used and ironically it's the term used by the clinic that the OP's daughter goes to! not worth arguing over.

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