Baby with congenital heart condition

[Curry19]

Hello,

I'm currently 24 weeks pregnant, our baby has a complex congenital heart condition. I was just wondering if there is anyone who has recently gone through this, or currently going through?

Thank you

[Milkfairy Heart Star]

Hello Curry19

Welcome to the forum.

You may find the help you need from the various support groups specifically for families in your situation such as Tiny Tickers and Little heart Matters

tinytickers.org/

lhm.org.uk/

I acknowledge it must be a worrying time for you. However the outcome for babies born with structural heart problems is very good.

Here in the UK we have outstanding centres of excellence providing heart surgery for babies.

childrensheartsurgery.info/

Great Ormond Street and The Evelina at St Thomas's hospital to name just two.

I hope you find the help you need and all goes well in your pregnancy and your baby's future surgery.

[ItsEllie]

hello curry19,

I was born with congenital heart disease and had my last heart operation at the age of 5 and that was for open heart surgery, 1hr after I came of Ventolin I was running around playing in the play area and that was my last ever operation and I'm 19 now. I go for a check up once every 12 months I have only ever had 2 knock backs one in my last year of high school which were blood clots on my lungs and then the second time was in September 2019 again blood clots but on my heart, lungs and in my main artery tubes which caused an heart attack this wasn't caused through me it was caused through doctors giving me the wrong medication I recently got told I was a factor 7 deficiency (immune to blood clots) after 19 years of being told I was a factor 5 deficiency (a rear bleeding disorder) and the doctors put me on medication I wasn't aloud (hormonal tablets Medroxyprogesterone)

Mainly my advise is, is to let your child be happy and don't stop them from doing things they want to do because only them knows what they can and cant do. If they cant do it they wont do it, If they can do it they will do it. Happiness is the key to life