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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Please help, I am losing my mind.

30 replies

Nikitab123 · 03/06/2025 16:53

I have just been for my anomaly scan at 20 weeks, the sonographer has said my baby has a heart problem, I am being refered to Leicester but this is a week away and mentally I cannot wait that long, any help / advise / similar experiences and outcomes would help massively. Could it be nothing? Could it be something small / and still able to live a normal life? Please help 😭

OP posts:
malimoon · 10/06/2025 08:47

If it helps, my younger brother was born with a heart defect and had to go straight to great Ormond St to have surgery when he was very small, another when he was about 2 and then further surgery when he was about 20. He was born in 1987 so a long time ago and medicine has advanced a lot since then. His life day to day is completely normal and unaffected by this condition. He might need another surgery at some point but it's not the kind of thing that dominates his life or even really factors into it. Doctors can do amazing things these days. Ask lots of questions so you're prepared but please don't think that your baby won't be able to do all kinds of things. My brother is married with four kids, has traveled the world etc etc etc!

WhiteBluebells · 10/06/2025 12:11

I'm so sorry to hear this op, if it helps the life expectancy with surgery and the prognosis is very positive, I would really look into it before you decide.
You will need to make the decision if you are happy to take the risk that they won't survive surgery and if you could cope with follow up surgeries and potentially them needing more care.
It's not an easy choice but whichever one you make will be the right one for you.

Original poster
Nikitab123 · 10/06/2025 16:48

malimoon · 10/06/2025 08:47

If it helps, my younger brother was born with a heart defect and had to go straight to great Ormond St to have surgery when he was very small, another when he was about 2 and then further surgery when he was about 20. He was born in 1987 so a long time ago and medicine has advanced a lot since then. His life day to day is completely normal and unaffected by this condition. He might need another surgery at some point but it's not the kind of thing that dominates his life or even really factors into it. Doctors can do amazing things these days. Ask lots of questions so you're prepared but please don't think that your baby won't be able to do all kinds of things. My brother is married with four kids, has traveled the world etc etc etc!

Do you mind me asking what heart defect/how severe it was? Thank you for your kind words. I have my amniocentesis booked for Monday so fingers crossed nothing else gets thrown our way x

OP posts:
malimoon · 10/06/2025 17:26

Nikitab123 · 10/06/2025 16:48

Do you mind me asking what heart defect/how severe it was? Thank you for your kind words. I have my amniocentesis booked for Monday so fingers crossed nothing else gets thrown our way x

Show quote history

I'm not sure what it is called but basically he was plumbed around the wrong way so his oxygenated blood just circulated between his heart and lungs and then the deoxygenated blood went round and round his body where it should be like a figure of 8 going thru the heart to the lungs back to the heart and round the body. Luckily he also had a hole in his heart so some oxygenated blood got through but when he was born he was blue nonetheless. The operations basically put in a tube to get things going around the right way and the later one replaced the tube as it was getting old.

None of this had been known about before he was born as scans were much less detailed/sophisticated back then, so he had to be transferred to a specialist hospital when born etc. My friend recently had a baby with a similar issue (in France not UK) and in that case they had the baby in a children's hospital with surgeons standing by so that baby had the best chance (she's now 3 years old). Obviously I can't guarantee what's going on with your baby but in my personal experience doctors can do a lot of amazing things. Wishing you and baby best of luck

Original poster
Nikitab123 · 10/06/2025 17:55

malimoon · 10/06/2025 17:26

I'm not sure what it is called but basically he was plumbed around the wrong way so his oxygenated blood just circulated between his heart and lungs and then the deoxygenated blood went round and round his body where it should be like a figure of 8 going thru the heart to the lungs back to the heart and round the body. Luckily he also had a hole in his heart so some oxygenated blood got through but when he was born he was blue nonetheless. The operations basically put in a tube to get things going around the right way and the later one replaced the tube as it was getting old.

None of this had been known about before he was born as scans were much less detailed/sophisticated back then, so he had to be transferred to a specialist hospital when born etc. My friend recently had a baby with a similar issue (in France not UK) and in that case they had the baby in a children's hospital with surgeons standing by so that baby had the best chance (she's now 3 years old). Obviously I can't guarantee what's going on with your baby but in my personal experience doctors can do a lot of amazing things. Wishing you and baby best of luck

Show quote history

it sounds like the same as what my baby has. Everything you’ve explained to me! I’m feeling much more hopeful hearing people’s stories. Thank you so much

OP posts:
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