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.
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!
That’s amazing 🥰
Such an inspiring reply , hugs, Bee
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 ❤️
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.
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!
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.
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
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.
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.
At age 39 I had twins and and my congenital heart defect was diagnosed a few years later.
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.
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.
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.
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.
I have congenital heart disease, Tricuspid Atresia, Pulmonary Stenosis and Ventricular Septal Defect, have had 3 open heart surgeries as a child, get managed yearly and take Warfarin (since forever) and beta blockers (since around 20 weeks pregnant as ended up with extreme palpatations) had multiple miscarriages (8) over 7 years, pregnancy I was in and out of hospital from week 16 to week 26-27 I think because of huge amounts of bleeding and horrendous pain, baby's growth slowed right down around 30 ish weeks, was monitored so closely and cannot thank the specialists/hospital enough for my care, they were AMAZING!! Had a planned csection at 36.2weeks, even had a car accident the night before I had my section and it was during covid (2020) my baby boy was born at weighing a tiny 4lb 2oz, I was taken to ICU for 1.5-2days spent 8 days in hospital and my boy spent 12 days due to jaundice and feeding issues but other than that he was born a healthy, happy little trooper and is now a cheeky, crazy, and still happy 4 year old, wieght/height are prefect, you would never of known he was born early and small. I recovered so well and it couldn't of gone any better just wish I knew what I know now as I could of enjoyed it was more. I was so anxious and scared just thought I was going to die, felt detached from my son due to not being able to hold/see him for the first nearly 2 days and just all seemed so surreal, probably because I thought it would never happen. There is always hope!! Talk with your doctors, keep everyone informed, look after yourself, take their advice and everyone's help. Having a bad hard makes it tricky but not always impossible as long as we are careful and listen to our doctors then we give ourselves every chance to do everything we want in life including being a mother. Our hearts have so much love to give too. I wish you all the luck in the world...
Congenital heart defect.
Fetal Congenital Heart Disease
Heart NHS or private?
