Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Pregnancy

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

Flip

Original poster

12 week scan heart defect

16 replies

Leaf86 · 18/12/2021 15:28

Hi all

We just had our 12 week scan today (first pregnancy) and were told the devastating news that it looks as if baby has a serious heart defect. The heart was pointing to the right instead of the left and they couldn’t see both ventricles (I think - the whole thing was a bit of a blur). We now have a horrible wait until Monday to see further specialists and get clarity, but the sonographer indicated that it was very serious and dealt with us on the basis that the baby was not viable (asked if we needed the relative’s room etc). She seemed incredibly competent and clear and we have no reason to doubt the findings so we are absolutely bracing ourselves for Monday. I just wondered if anyone has gone through anything similar - positive or negative outcome - and could share.

I keep wondering whether 12 weeks is very early to be so certain on something like this, but then again, she was able to explain what she expected to see and couldn’t. I’m absolutely terrified to potentially go through a TFMR of a much wanted pregnancy and any experiences on this front would also be really appreciated.

Thanks so much for reading.

OP posts:

Torina · 18/12/2021 15:33

I don't have any experience with this, but I just wanted to say I'm so sorry, OP. XXX

time2tork · 18/12/2021 16:13

Hello my lovely.

I was very sadly in a situation like this at the beginning of the year.

I was 13/14 weeks a long and it showed a Heart Defect plus CDH.

My pregnant went to 16 weeks as I got the severity confirmed by a Consultant. My poor baby was in such a bad way.

I had a termination for medical reasons, it was the worst experience of my life, not physically but mentally - it screwed me over in the moment and for the next month ahead.

I am now 7 months pregnant and can finally speak about my experience without it hurting me.

I really really hope that your baby will be ok xxx

Original poster

Leaf86 · 18/12/2021 19:19

Thank you both.

@time2tork I’m so sorry for your loss. All the very best for the home stretch of your current pregnancy.

OP posts:

Shiteshow100 · 18/12/2021 19:23

I can't offer much input, however as a mum I can understand your pain.
My thinking would be to wait until you know all you can possibly know and go from there. Good luck xx

todayistheday11 · 18/12/2021 20:04

Couldn't read and run as the mum of a now 8yr old with a CHD and other family members with severe heart defects from birth, please speak to the experts but listen to yourself, you always know best! Wishing you well with whatever decision you make any questions pls ask x

time2tork · 24/12/2021 09:44

@Leaf86

Hope you're doing ok!

Blxo94 · 24/12/2021 10:15

Hand hold ❤️

I've had 2 TFMR's & due to my daughters having anencephaly. The only advice I can give it be kind to yourself and make sure you have the support you need around you as it really is a terrible thing to go through.

I haven't had a baby diagnosed with a heart defect, but I do know that they can catch these things at 12 weeks and they are usually very clear and spot on with diagnoses. I do hope for you both of course that baby will be OK. I'm so sorry you got that news xx

Original poster

Leaf86 · 24/12/2021 10:47

Thank you so much for thinking of me and responding. We did get a really clear (and catastrophic) diagnosis from the fetal cardiology team and we don’t really have a choice but to TFMR. The worst thing has been the impossibility of getting an appointment without having to wait for weeks. I’m currently being told I have to wait until I’m 15 weeks (nothing sooner) and I’ve had to chase for information at every stage - no one has called me to update me. It’s made a horrible situation even more disempowering and upsetting.

OP posts:

time2tork · 24/12/2021 11:03

@Leaf86

That was the exact same position I was in.

I was 16 weeks on the day of my appointment. The days leading up dragged on for what felt like months and I could not find any information on the internet anywhere of what to expect from the surgical termination at 16 weeks - there was just nothing.

I hated not knowing. So much so, on the day - I couldn't breathe when they laid me down and tried so sedate me, I had a panic attack on the table and they were almost going to refuse to do it - but I had already taken the tablet to stop the pregnancy from developing so I had to go through with it.

Even if you don't need the reassurance that I desperately searched for...

The actual surgery was not as bad as I thought it was going to be and neither was the recovery - I had a wild dream waking up and I automatically wanted to ask how the baby was like I'd just given birth 😕 (drugs are crazy!)

The worst part for everything was my mental health and finding a way to get over the loss. It felt like a huge, huge loss, but how could I grieve for something I chose to loose? But I didn't choose to loose the baby, I chose for my baby to not live a life in pain - in the end my baby suffered no pain... in a way I saved it..

Everything about the surgery went against my maternal instinct as a Mother, pregnancy was not supposed to end in that way.

I hope that you get all the care and recovery that you need!! You may get asked a million times "have you spoken to anyone to help?" In my experience, there's nothing any psychiatrist can say that will ever "help"..

If there is anything you need let me know. Mine was in March this year - just so happens I'm expecting our next (so far healthy) baby in same month a year on from when I lost the last one - it will always be with me in its sibling 💝

4thtimethecharm · 24/12/2021 11:39

Have you heard of ARC, the Antenatal Results and Choices people? They are a charity specifically for these situations with a phone helpline. It was lovely to be able to talk things through. (They don't move you either way, but are there to be a sounding board, etc.) If their phone line is temporarily closed, please pop them an email, they are very responsive.

I am so very sorry, OP. Please know you are not alone, and there is a whole bunch of us virtually holding your hand.

Original poster

Leaf86 · 24/12/2021 22:00

Thank you both. I will reach out to ARC after Christmas.

I’m really quite scared of the surgery - I have emetophobia and I also don’t like feeling out of control / off my head. Frightened I will vomit and/or be all over the place. I think I would feel the same as you @time2tork and panic. The build up and waiting, of course, makes it worse. :-(

OP posts:

sarah13xx · 24/12/2021 22:52

That is absolutely devastating news and even worse that you have to continue on for 3 weeks knowing this news. Why is that actually allowed to be the case in this day and age?! It’s the same with those who have sadly lost their baby but haven’t naturally miscarried and need to continue on with their life waiting for an appointment to go in for the surgery 😓 Theres never a good time for anything like that to happen to someone but such a dreadful time of year to be going through a really hard time.

I’m so sorry. A friend of mine had a baby last year and was given bad news at scans about the baby’s heart, although I think they believed they might be able to operate to fix it. She was born and died just a week or two later 😢 absolutely devastating for them. I think the hospital originally didn’t think it was as urgent as it was and sent them home initially so by the time they realised something was badly wrong the damage was already done 😔 Just so utterly tragic. Thinking of you and I hope there is some light on the horizon for you

Tickly · 25/12/2021 21:12

I'm so sorry. This happened to my friend and she chose to have a medical termination. It was incredibly difficult for her to make that choice and she made it largely because it looked so unlikely baby would survive and also because of the impact on their older daughter (both of a sibling death and because if the baby had not died then the quality of life would have had a huge impact). She still speaks about her baby to me and there is a tree planted to their memory.
If it is CHD you're likely to be offered support for future pregnancies which is positive because you will get extra care and checks. We lost a child to heart disease and had this though not congenital and it was very reassuring.
Whatever you decide my thoughts are with you through this difficult time.

Original poster

Leaf86 · 01/01/2022 20:47

Thank you so much for your messages. @tickly I’m so sorry for your loss.

As an update to this thread, I had my surgery yesterday. Physically it was fine and I’m slowly recovering with just mild cramping and bleeding so far. Emotionally it feels catastrophic, like I left the most important person behind at the hospital. Hoping time will ease the pain. The messages on here and actually on other threads covering other losses have been just SO kind and helpful. It’s a sh*tty club to be in to lose a baby but it makes you feel less alone. In the real world it feels like everyone you know has healthy babies and healthy pregnancies and you’re the only unlucky one.

OP posts:

Tickly · 01/01/2022 20:59

Im so sorry. Take your time to grieve. If you choose to go in to have another baby in future, it is completely ok still to love the baby you lost.

Didiusfalco · 01/01/2022 21:07

Oh gosh, I’m so sorry. I’ve been where you are and at exactly this time of year too. The emotional turmoil as your hormones readjust is brutal. It took me a really long time to stop feeling very fragile. Be kind to yourself and don’t expect too much, allow yourself to feel very sad without thinking that you ‘have to get on with things’. I think the sadness also comes in waves. I wish there was a magic shortcut to make you feel better, but you just have to take one day at a time.

Flip