Leaking heart valve 12 week scan

[Wingingthis]

Had my 12 week scan last week and after they took us to a quiet room to say the baby had a leaking heart valve. They said it could be one of three things

1. A totally normal part of development that the baby will grow out of
2. A chromosome problem (eg Down’s syndrome)
3. A heart defect

My blood work came back and they’ve ruled out chromosome problem so now we have to wait till 20 weeks and have an additional cardiology scan to rule out a heart defect. :( Has anyone else experienced this? The wait is killing me.

Thank you

I haven't but didn't want to read and run. It must be awful having to wait like this - you and your partner have my sympathies. I hope some folk will be along soon who can share their experiences which might help.

Thank you for your lovely reply 🧡

Hi op so sorry to hear this. Can I ask why you have to wait until 20 weeks?
The only reason I ask is we had to terminate a previous pregnancy at 20 weeks due to a serious heart defect (a very complex and rare one) and this time around because of our history they gave us a fetal cardio scan at 15 and 22 as well as 20 weeks.
So I wondered why they are making you wait so long? Do you have contact with a screening midwife at your local hospital that you could chat to about it?
The waiting is the worst bit you had my utmost sympathy and I really hope that it’s one of those odd things that rectifies itself

@bellasblankexpression

So sorry to hear about your previous pregnancy, how utterly heartbreaking! I can’t even imagine. :(

They said we have to wait until 20 weeks because the heart is so small at the moment and they won’t be able to see what they need to see? I might call up and double check this though. 8 weeks is such a long time to worry & wait!
In your previous experience did they pick anything up at the 12 week scan? Or did they only find out at 20 weeks? X

I would call up and ask - they could see plenty at our 15 week scan - we had it done by a special cardio expert at the Brompton in London.
She measured valve sizes blood flow and all sorts.

The first time round they found it at 20 our 12 looked fine but because it’s such an unusual defect it doesn’t normally get found until later than 20 usually. Which is why we have so much extra monitoring now.

I would definitely see if you can speak to someone - just feeling like you’re lost amongst it all can add to the anxiety.
Do you know if the 20 week will be a specialist fetal heart scan or will it be the standard anomaly scan and if they find the same issue they’ll then give you an appointment with a cardio specialist?

It’s such a long time to wait, I really really feel for you - and please don’t be scared by my previous experience, as I say it’s so rare and completely different to what they’ve found with you. And I do know plenty of people who have had things flagged up in pregnancy that have resolved themselves. Also try to remember that although the words heart defect sound so so scary, there’s a scale to it and many of them can be treated after birth now.

No experience of this particular problem but I had a chromosomal diagnosis suspected at 20 weeks and had to wait 2 weeks for confirmation which was so hard.

Are you near a large teaching hospital? If so and you can afford it I would go privately to see a neonatal cardiologist. At 16 weeks they might be able to tell from the scan what is more likely, which will put your mind at rest/help prepare you for the worst.

From a practical POV try to act as if nothing has happened (massively easier said than done, I know!) During my 'wait' I was in a terrible state and almost forgot that whatever outcome that my baby was still in there alive and kicking, happy enough at that moment. I didn't buy anything for the baby because I was too scared too but looking back I feel as if I wasted those weeks, when realistically there was nothing I could do to change things.
Hopefully everything will be fine and someone with experience will come along soon

I’m really sorry you’ve got all this worry. I haven’t had the experience of s leaking valve, but I was told about a brain abnormality at my 20 week scan, so I perhaps know a little how you’re feeling. I would stay away from google - this is advice I should have followed. What helped me was to find a support group for my particular problem (found my one on facebook). It also helped to take charge of the situation as much as possible. For example, I booked a scan at the London Fetal Medicine Centre (think that’s what it’s called) in Harley Street. Its very highly regarded. I also accepted all tests offered, kept busy and looked into whether to change hospital/ what hospital to go to for treatment following the birth. All this helped me to feel more in control. It may or may not help you. Try not to worry (I know that’s easier said than done).

Sorry you have had this come up. I just wanted to say try not to worry too much until you have more information. Also these things can change as the baby grows.

My DC was diagnosed (but not until birth) with a heart valve issue which we were initially told would require significant surgery. In fact as they grew the issue has pretty much resolved itself. We have biannual monitoring and it poses no problems at all.

Can I ask what your results were, in the end? My friend is in the exact same position as you and is awaiting a 20 week scan, now...I hope you had a positive result. It must be so hard.

@RolyPolyUpUpUp everything was fine :) and was told (at the 20 week scan) that in 95% of cases it is fine!

Sending love to your friend x

Hi Hun, firstly so sorry to read all that, I pray for you all is okay, I experienced the same with my daughter and unfortunately it didn't end very well, dont want to go into detail as not fair too as its definitely not the same for everyone. But please if you ever worry and need someone to ask anything too please do. Good luck xx