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Original poster

Increased NT @ 12 weeks

74 replies

mothersandsons · 03/05/2019 08:38

Hi everyone,

I really need support!
We went for our dating scan yesterday (12w4d), and were told the NT is raised at 4.1
We were offered CVS, and proceed. The results won’t be due for at least a week, and that final set will be available two weeks after.
The blood tests initially sent with the scan (before the CVS) has come back normal. Our risk has been quoted as 1:24

I feel helpless, sad, upset and angry. My husband I were shocked, and are basically in the same boat. We don’t feel able share this with our families/friends... in case... I don’t know we have to make very difficult decisions.

Has anyone had a similar experience? What was the outcome of your chromosome test? And... if you went on to have the baby... is he/she developmentally normal (achieving their milestones)?

I would love you to please share your experiences. Can’t seem to stop spontaneously bursting into tears!!

OP posts:

Paddybare · 06/05/2019 08:33

No, the 12 week scan didn’t reveal anything out of the ordinary so we were (perhaps naively) expecting all to be ok at 20 weeks. In hindsight, it’s amazing how much detail is examined at 20 weeks.

mintchick · 06/05/2019 08:41

I'm sorry you're going through this. It really is so scary but wanted to share my story. I have twins, found out at 12w it was two. Then followed 5 mins later the news that T2 had a NT of 6.1mm. Talk about shock! Blood test came back at 1:14 and 1:28. (T1 was 1:28000). Referred to fetal medicine. Offered amnio and declined. Had NIPT at 13w and came back less than 1:100000 risk. Other issues then showed up the more scans we had suggesting to may be something other than DS, ES or PS. Had fetal cardio scan. All found to be as it should be. Still issues upon regular scans, t2 consistently smaller than should be, short long bones and talipes was diagnosed at 15w. Long story short (or maybe not!) we ended up having amnio at 29w so risk was preterm labour rather than miscarriage and it came back all clear. Sometimes it is just one of those things. My twins are nearly 2 and a half now and nothing wrong with either of them. T2 was born with clubfeet which is now corrected and neither have had any issues at all. T2 is indeed smaller than t1 and he does have a short fat neck! Like the other males on my side of the family, who happen to be also shortish at 5ft 6. Good luck and I hope everyone sharing their experience has helped a little bit xx

Wishful888 · 06/05/2019 08:47

Hi motherandsons
Very sorry you are going through this I know how stressful it is. At my 13+1 dating scan we were in a similar position. NT was borderline 3.5mm. Bloods ok. No other markers. Screening risk 1:115. Foetal medicine told us to be cautiously optimistic - there are instances that the NT is raised for no explainable reason. I hope this is the case for you. Our CVS was positive for an abnormality. There is lots of support via ARC during the waiting period for results, suggest you contact them.

Newyearsameoldshit · 06/05/2019 09:23

Big hugs to you, it's such a tough time and the waiting is excruciating.

My daughter had an NT of 5. something as well as fluid around stomach and lungs. They didn't even do my blood test, they said it would be high risk whatever the result so we went straight for cvs, that wasn't possible so we had to wait for amino.

All came back clear, as did a couple of heart echos and we now have a healthy 3 year old. Very lucky indeed.

I hope the wait passes quickly and you get a good outcome, I'll be thinking of you x

Original poster

mothersandsons · 07/05/2019 10:56

I wanted to share the results with you... we’ve had bad news, and have been advised a TOP.
I’m not sure how much more of this my husband and I can take! How do you handle being pregnant knowing you will not be before the end of next week?? Help

OP posts:

mintchick · 07/05/2019 11:30

Oh op I'm so so so sorry. Thinking of you and your husband. Stay strong xxx

Bluebell9 · 07/05/2019 11:50

I'm so sorry to hear this. Thinking of you.

WelshMammy123 · 07/05/2019 13:27

I am so so sorry to read your update. As per my previous post, i've been there and it's absolutely heart breaking. We are forever changed by what we went through. Again I would highly recommend ARC. If you want to pm me please do x

cattaxi · 07/05/2019 13:31

I’m so sorry @mothersandsons. It’s so unfair. Do contact ARC for support. And I don’t think you have to ‘cope’ it’s perfectly ok not to be ok.
Thinking of you x

PBobs · 07/05/2019 13:56

I'm so sorry. I'd been watching from afar and hoped it would be good news. Thinking of you.

Wishful888 · 07/05/2019 15:03

So sorry to hear your news. It can feel very difficult to cope, please know you have support on here if needed. Take some time away from work too.

Littlebelina · 07/05/2019 15:34

Really sorry to hear your news. Echo pp about calling ARC, not used them myself but heard good things

Original poster

mothersandsons · 07/05/2019 17:40

This may sound crazy but... Would or have any of you tried for another baby after something like this? Did it go well?

I’m grateful for all your kind words. Thank you

OP posts:

WelshMammy123 · 07/05/2019 19:46

Hi @mothersandsons, Sorry to be such an active contributor but given we went through the same thing I'm hoping it's helpful for me to do so.

Yes we tried again. When we lost our DD we already had DD1 (took us years to conceive her). After we lost DD2, we waited a few months and tried again. It did take a while but we fell pregnant again and DD3 is now 10 months old.

We had genetic testing to see whether the condition DD2 had was something DH and I could of passed on to her. It wasn't but I was pregnant again by the time the results came through and that was an anxious time.

I was very closely monitored during my pregnancy with DD3. Very frequent scans (I had grown to hate scans) and was consultant led. But I felt very well looked after.

I hope you're doing ok x

Original poster

mothersandsons · 07/05/2019 21:34

@WelshMammy123, thank you so much for your message. It gives me hope... I’m not sure what I/we want at the moment. Not going to think about it for a while.

I’m really freaking out about the TOP, which apparently has to be surgical and a week away. I can’t stop crying then feeling numb. Guess, that’s normal.

What makes me sad is most women my age don’t even have to worry about things like this when they are pregnant. I keep telling myself God has a funny sense of humour!

OP posts:

Pollypocket5 · 08/05/2019 09:53

Hi ladies,

Sorry to jump in but I stumbled across this group and really hoping some people can give me some guidance. We went for our 12 week scan yesterday was given the score of 4.6mm. They have taken blood but in the mean time I have been referred which my appointment is on Tuesday.

I'm literally losing my mind and don't know what to do. What to think!

What are my chances of having a healthy baby?

Wishful888 · 08/05/2019 10:05

Hey pollypocket sorry to hear your news. No body can really tell you the chances, but the odds are stacked in your favour regardless of age etc, as the majority of pregnancies are ok. However as you'll read below, someone always has to be the 1% or whatever, of the statistic and unfortunately that has been some of us. Try to be strong and distract self over the coming days until you have further info x

Pollypocket5 · 09/05/2019 08:22

@Wishful888 Thankyou so much for your reply. I have been speaking with arc the charity and they have put my mind at rest a lot. Just trying to get through the next couple of days before seeing the consultant.

PastaSauceHoarder · 09/05/2019 08:55

@mothersandsons, I am so sorry, I've just read this whole thread and I'm so sorry you have to go through this.

I also had to terminate a 12 week pregnancy in March just gone - hardest thing I've ever had to do but it was definitely the right decision for us. Our baby had a NT of 8.4 and was also rapidly developing hydrops all over its body so we were told it likely wouldn't survive to 16 weeks. Very dangerously ill.

Please do drop me a message if you need some advice or help or support or something. My TFMR is still very recent and raw so I know exactly what you're going through.

Original poster

mothersandsons · 09/05/2019 08:58

@Wishful888 sorry that you too are going through this. Were you given the odd of Down’s and Edward/Other?
This is calculated from mother’s age at the time of delivery, your NT measurement and blood results.
From all my reading I understand a risk more that 1:112 (or around it) is considered high. It’s a numbers game!
I’ll stop there... but if you want to know more do write back. Wishing you all the luck x

OP posts:

Original poster

mothersandsons · 09/05/2019 09:03

@PastaSauceHoarder I’m really sorry for what you’ve been through. Ours is booked for next week. I feel numb at the moment, and my poor husband is angry (with the world/God).
I’m keeping busy. I asked the midwife yesterday how one lives with being pregnant knowing your baby will be gone in less than a week... she replied you will in time. I’m coping by pretending I’m not pregnant anymore!

OP posts:

PastaSauceHoarder · 09/05/2019 09:13

Thats exactly what I did, @motherandsons. Just pretended I wasn't pregnant anymore. But I still felt horribly guilty if I decided to eat some food off the 'banned in pregnancy' list, or took some ibuprofen or something. Also started wearing really loose tops so no-one (including myself) would see my bump. It was horrible and I felt like I was totally rejecting the baby but I had to do it to cope.

Honestly just do whatever makes all of this easiest for you. Did they say why they had to do it surgically? We went down the medical route which wasn't nice at all.

wishfull888 · 09/05/2019 09:17

@mothersandsons yes anything below 150 is considered high. I went through this in 2018. My risk was for a chromosomal issue, not specific as there were no other soft markers. It turned out to be T21.

Original poster

mothersandsons · 09/05/2019 09:33

@PastaSauceHolder I’m really sorry.

Anything more than 10 weeks needs to be surgical. I was a bit upset to hear that there is a theatre list dedicated to this... because they only offer TOP on medical grounds here. I felt for the women in our position.

I was trying to explain to the midwife that we felt guilty, and she was honest... it’s something that will never leave you but you learn to live with it over time. My Consultant and midwife were kind, and said we shouldn’t lose hope because lots of woman come back with another pregnancy and things are fine. I’m hoping that’s the case for most women who have had to live throw this nightmare.

OP posts:

Original poster

mothersandsons · 09/05/2019 09:34

@wishful888 sorry to hear that

OP posts:

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