Congenital Heart Disease : Hello... - British Heart Fou...

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Congenital Heart Disease

AH31 profile image
AH31
14 Replies

Hello

This is mainly aimed at Females who have congenital heart disease.

I have recently had my third open heart surgery, it’s been successful and I’m recovering well. I would like my own family in the future which the hospital is aware of because that’s on of the reasons as to why I have had surgery.

Has anyone gone on to have their own family with congenital heart disease.

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AH31
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14 Replies
10gingercats profile image
10gingercats

Yes. I had a baby in my early forties.I have congenital heart disease in various forms plus Afib. Most of the congenital had not been detected at that time An unrelated issue led to a caesarian which went well and the baby was full term and fit and well. Now in his 40's and I in my mid 80s!

AH31 profile image
AH31 in reply to 10gingercats

That’s amazing 🥰

Blearyeyed profile image
Blearyeyed in reply to 10gingercats

Such an inspiring reply , hugs, Bee

MissDolittle profile image
MissDolittle

So I’m not sure if this helps but I had two children with no complications at all, and then 6 years later it was discovered I had a congenital heart disease that no one knew about. I have now had OHS to correct it so I don’t know if that makes a difference, but apparently my poorly heart managed to cope with not one but two babies.

Hope everything goes well for you ❤️

Milkfairy profile image
MilkfairyHeart Star

Hello,

Are you aware of the Sommerville Foundation? It is a charity for adults born with congenital heart disease.

They maybe able to connect you with other women born with congenital heart disease who have been able to have a baby following heart surgery.

sfhearts.org.uk/

Have you been referred to a specialist centre where they can provide you with pre pregnancy counselling?

There are several centres in the UK where Cardiologists, Obstetricians and Midwives can support women through pregnancy with heart disease.

Perhaps ask to be referred to such a unit for further advice ?

For more information see the link below.

britishcardiovascularsociet...

Good luck!

Rosie1066 profile image
Rosie1066

yes, I did with congenital heart disease. I had two children both now in their late forties. Both babies were fit and healthy. One was born by emergency caesarean at 30 weeks but that was not due to my heart condition.

ScoobyDoo71 profile image
ScoobyDoo71

I have 2 healthy boys in their 20s now. Mine was fairly simple CHD and I think because of that they didn’t really do anything other than standard maternity care.

Remember this was 26 years ago, hopefully they now realise the implications of CHD and pregnancy and you will have much closer specialist care with the ACHD team. Many women with ACHD can have successful healthy pregnancy as long as well monitored and cared for.

My health definitely got worse during and after pregnancy. I had a really long traumatic labour with first son lost a lot of blood but didn’t get treated for severe anaemia til weeks later which impacted health hugely. As soon as pregnant with second son got symptoms of heart failure. Never saw a ACHD specialist just general cardiology who just put everything down to being pregnant. Since then have had arrhythmias Pacemaker and breathlessness and was told not to have any more children.

As long as correct care before, during and after and you look after yourself and are able to make informed choices then you have best chance. Good luck xx

Jb1958 profile image
Jb1958

My daughter has a congenital heart defect bicuspid valve. She had surgery at 10 weeks and again when she was 29. She is now 35 and has 2 wonderful little boys. She was regularly monitored during her pregnancy. She had a c section because her first baby was breech and not because of her heart.

Gundoglady profile image
Gundoglady

I was born with a bicuspid aortic valve back in the 60's, I was always told I couldn't have children, couldn't do sports, couldn't learn to swim...........,move forward a few years, and the information started to change, I was told IF I was going to have children to have the when I was young.I had my first child when I was 19 & my second at 21, they are now both in their mid/late 30's , I would say I had to see my consultant every month for the last 6months of the pregnancy, but, I had no problems during pregnancy or labour.

I didn't have OHS to replace the valve until I was in my 40's. I've had LBBB since the operation and have had a pacemaker fitted.

But, I guess what I'm trying to say is , is that information and learning is a continuous stream, that never stops, but, is always changing.

Cat04 profile image
Cat04

At age 39 I had twins and and my congenital heart defect was diagnosed a few years later.

LadyZ13 profile image
LadyZ13

Interesting thread. I was diagnosed with my congential heart condition at the age of 38. My consultant said, if I had been intending to start a family, that I should get on with it and they'd repair the hole in my heart once I'd given birth - I was healthy before the surgery and it was the correction that triggered right side heart failure. But I was way too selfish 😅 told them to get on and prioritise my life because I wasn't rolling the dice for the sake of a baby. I assumed it would finally close the door on motherhood for me and it's certainly been a helpful excuse to all the relatives who think I am awful for not being fussed about having a child! But I would say to speak to your team and don't be afraid to get a second opinion.

AH31 profile image
AH31 in reply to LadyZ13

You’re not selfish, I have basically had my third operation last month because they said the same to me.

Best to have the surgery now due to health and age, I would be happy with just one child despite people saying I’m selfish for not wanting more but my attitude is the same as yours, I’m not rolling a dice and playing a game with my health.

Schora1 profile image
Schora1

Hi, I have a heart murmur I was born with and I had a hole in my heart. I always have to have antibiotic cover for the dentist or any surgery.

I had two beautiful children, both natural births, albeit I was carefully monitored and I had to have a senior obstetrician at both births with heart monitors on me. I was told if they weren’t happy they would do a C Section but thankfully everything went smoothly.

Speak to your GP for advice.

10gingercats profile image
10gingercats

How wonderful to read all these replies...so life afirming. When I gave birth in 1979 it seemed as if congenital childbirth was in its infancy and at 41/2 i was 'an old prima para'.I did stop at one child though and have not regrett.ed it .I decided to stop while my luck was in.

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