High NT measurement at 12 week scan

[CFE1]

Hello. Needing to share what is going on in my head, and hoping to hear from others who may have gone through the same thing.
I'm 41, and have an amazing 3 year old. I found out I was pregnant again at the end of September (it came as a bit of shock as we hadn't been trying for long), but we were thrilled. It hasn't been the easiest of first trimesters, my sickness has been horrendous, and I've experienced alot of discharge and had 2 very small bleeds. We've been seen by the EPU and had a couple of private scans and everything was looking great.
We had our dating scan yesterday; baby had a lovely strong heartbeat, and was very wiggly and generally looked lovely and healthy, we measured exactly where we thought we were (exactly 12 weeks); however they measured fluid on the back of their neck at 6.7mm which I know is very high. We've been referred to a specialist at a different hospital (we are in Yorkshire) so we are just waiting for an appointment for a more detailed scan and possibly a CVS. They didn't give us anything remotely positive yesterday; and now we feel completely in limbo while we wait for our appointment to be confirmed. If anyone has any words of wisdom on how to survive the wait please do share. Sending love to anyone in the same boat; its the worst feeling in the world.

So sorry to read this, @CFE1 . I’m afraid I don’t have any experience in this area but I would say don’t google! Did they say when your appointment might be? Did they give you a contact number to call or anything?

I’m sorry you’re going through this. It’s the worst time and all the waiting for results. We had a similar NT measurement a couple of years ago (6mm) and unfortunately it wasn’t good news for us in the end but I read many stories of happy outcomes with high measurements at the time so don’t lose hope. Just take it one day at a time.

We are Yorkshire too and we’re referred to the fetal medicine unit at the LGI who were very good so if you’ve been referred there you are in good hands.

Hi both thanks so much for replying. I’ve checked out a few threads and they have been helpful (and people have been really honest whether their final outcome was positive or not.
@Herewegoagain8 we’ve been referred to LGI; weirdly my boss went through a similar situation and went through LGI and said they were fantastic.
@WolfFoxHare we have an appointment on Monday so feel like it’s still an age away but know it will be here quickly. Our amazing 3 year old is keeping us busy and distracted which is the best way to keep going. Thank you again both for your kind words; I’ll keep you posted xx

Hi! I always reply on these so you may see my experience elsewhere. We had a measurement of 6.8mm with assumed hydrops but we were the minority and had a positive outcome resulting in my very healthy 3 year old. All literature will tell you to expect a bad outcome and I think in most cases, unfortunately it does result in this but there are exceptions. I was advised to get an abortion at my first scan - so so glad I didn't! The waiting is horrendous. I feel for you. Try to keep busy as much as you can!

Glad to hear you have an appointment on Monday - they’ll help you make sense of things. In the meantime (and I know this is stupid facile advice!), try not to dwell too much on it and focus on your toddler! Good luck for Monday x

Hi everyone; thanks again for your kind messages. We had our scan today and the baby has deteriorated since our scan last week; with a very raised heartbeat and fluid all around the body. Our sonographer was incredible (and kind) and was very honest about our prognosis. We had the CVS done, which wasn’t as horrendous as I thought and we will either get the results back tomorrow or Wednesday. We have made the extremely difficult decision to TFMR; so we can allow our baby some dignity, as the thought of miscarrying (which I now extremely high risk of) just doesn’t feel right. We are beyond devastated and can’t quite believe we’ve had to make this decision. We are hoping this isn’t the end of our story; while we we wait for our appointment we will be squeezing our beautiful daughter extra hard and showering her with more love than possible. I hope no one judges us for our decision. Sending love and thanks to everyone again who has reached out xxx

@CFE1 no one can judge you. You’ve been put in a horrendous situation but have made the decision that’s right for you and your very loved baby.

I’m so sorry that this is the outcome for you, please be kind to yourself xxx

Thank you @ManchesterRoad; I really appreciate your message. They are so loved and we want them to feel our love until the very end xxx

Nobody will judge you, you are doing what you feel is best for your family and your baby. We had to make the same decision and it dragged on until i was 20 weeks, it’s the worst time.

Your daughter will give you a focus and get you through, I know my son pulled me through that time.

I hope it’s not the end of your story if that’s not want. To give you some hope I had my DD almost a year to the day after my TFMR and am now pregnant again at 40. Be kind to yourself x

Thank you @Herewegoagain8 and I am sending you so much love for your pregnancy, I hope you are looking after yourself ❤️

We have received the result of our CVS and they have confirmed that the baby has Patau syndrome. In a strange way, I’m glad we have had an answer so we don’t need to put the baby through a postmortem, and it has helped massively with the decision we have taken to tfmr. We are booked in tomorrow; and I am determined to give our baby as much dignity as possible. Thank you again to everyone who reached out, sending love xx

Oh love, I'm so very sorry.
I wish I didn't know how you feel.
Sending hugs and love to you and your family. X

Hi everyone. Writing this from hospital after a very intense few days. Arrived on Thursday morning for the tfmr; long story short we weren’t seen properly by a Doctor until 5pm, meaning I didn’t start the pessary’s until 6.30pm. Thankfully my body responded well, and our beautiful baby was delivered just after midnight. My placenta on the other hand decided it was enjoying itself too much and stayed put until I had surgery last night. Needless to say I will not be rating this trip 10/10. Physically I feel ok ish; mentally I am completely closed off at the moment (I told my husband last night he should leave me and find someone better to have another baby with 👍🏻). I’ve had to be on my own since Friday night as we’ve had no childcare for our daughter, waking up alone after surgery last night was deeply upsetting and I had some quite dark thoughts overnight.
All being well I will be discharged today. We haven’t seen our baby yet, but will be seeing them today. We sent a teddy and blanket to be with them so they haven’t been on their own. Thank you again for all the kind messages xxx

Hello, I'm sorry to hear what you're going through. Not quite the same but with my first I was very anxious and on the 12w scan they "couldn't really find the baby". They could sort of see limbs and a face so something was there but couldn't get the heartbeat or do any testing.

I had to wait until 16 weeks to do the blood test for downs and then another 2 weeks to get the result. It was awful. I felt both pregnant and not pregnant, excited but aware that it could all be over soon, for those weeks. It wasn't until my 16 week appointment where I heard a heart beat that I even had confirmation that my baby was alive. I felt sick every day.

I threw myself into my work and really focused on that. I had a countdown timer app on my phone counting down until I got more certainty. And I tried to cherish the time I had pregnant, just in case it ended soon. I also didn't tell anyone about the pregnancy even though we'd been planning on telling everyone after the 12 week scan. Everyone is different so do what suits, just think about what you can do to cope.

Time always marches on for better or for worse so remember that you will have certainty soon. Good luck with everything.

Oh gosh just read your update. I'm glad you have been able to make a decision and have some clarity. Wishing you all the best.