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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:
Em39ma · 03/05/2019 09:05

Have you thought about having the Harmony test, most areas you will have to go private and pay for it, it’s about £400.
My sister in law had results similar to yours but all three are fine.

Helsvamp · 03/05/2019 09:30

I had non vasive one after I had a 1 in 12 chance and lucky came back clear and got to find out sex of my son at 14 weeks and results can take up to 2 weeks .

Helsvamp · 03/05/2019 09:31

If you choose to have the needle will have to wait until 16 weeks then 2 weeks for results

Original poster
mothersandsons · 03/05/2019 12:46

Thank you @Em39ma and @Helsvamp. What were the outcomes at the end of the pregnancy?

OP posts:
Littlebelina · 03/05/2019 13:00

If you have already had a CVS then there is little point going for a harmony or other no invasive test as the CVS will be more accurate. The non invasive tests ( NIPTs) are very accurate but only screening. CVS ( or amnio - this is what you have after 16 weeks ish CVS can be done before) is diagnostic so will give a definite result.

If you haven't had a CVS yet then a NIPT is worth considering but be aware a positive result for a chromosome disorder would need to be confirmed by CVS anyway. A negative is a really strong indicator your baby doesn't have one of the main chromosome disorders. However high nt can still be an indicator of other issues ( such as heart issues) so you might need additional scans. Have you had a chance to chat with your midwife or the fetal medicine midwife? Maybe worth giving ARC a call.

I had an amnio due to a heart condition being detected (nt was normal) so know the wait for results is awful. Good luck, lots of times high nt comes to nothing from what I have readFlowers

Waggily · 03/05/2019 13:46

The wait for the results is the worst part. With my son, there other signs that he was very ill and we expected to get a positive result from the CVs, but it’s still awful waiting for them to tell you. It took 7 days to get our results and that was delayed as it was when all the NHS systems went down. Hopefully you will find out soon.

Helsvamp · 03/05/2019 14:40

My son came back all clear and no heart problems too

HighNT · 03/05/2019 14:52

Hi OP,

I was in the same position as you, with the same NT result. I spent hours and hours searching forums for outcomes and heard from many other people who were still pregnant but not many who'd had their child.

Often I'd read that the babies were just fine and healthy (a lot still are!) and sometimes I'd read about someone had a baby who did turn out to have a problem of some sort. These mums would say how amazing their children still were but my heart would sink because she was my first and I didn't understand how it could still be so wonderful (it sounds so awful but it sounded like they were being falsely cheery about a consolation prize)

Well, my DD is 1 and she really is absolutely amazing and is my world. She was early to crawl, the first of her little friends to walk and said her first word early. She beams at everyone and people are always stopping us to say she's the cutest they've seen (mind you that probably happens to most parents with cute toddlers!). I can't put into words how wonderful she is. Her CVS microarray was clear, as were her fetal heart scans and anomaly scans. She seemed totally normal at birth but by 8 weeks we realised that actually she does have a couple of structural problems. In fact they are quite severe and she may need several intensive surgeries. Of course that is a worry because we love her so much and of course I wish she didn't have this on her plate, but I wouldn't change her for the world and our lives are still very happy. Modern medicine is amazing and I believe she will have a totally normal life and I expect she will continue to develop at a million miles an hour!

There's every chance your baby will be totally normal, but I just wanted you to know in case you are doing what I was doing and feeling how I was. Good luck!

Original poster
mothersandsons · 03/05/2019 15:21

Thank you sharing something so personal @HighNT. Flowers

OP posts:
Em39ma · 03/05/2019 16:34

@mothersandsons
The results came back from the harmony as no risk.
Blood test and extra ultrasound is all it is. Much less risk than with CVS.
I was going to go for the harmony too, if my results had come back as high risk. I’m 40, slightly overweight, so was a high risk to start with, by my pine were 2.1 and 1:1700

Em39ma · 03/05/2019 16:35

Sorry it should of said mine , not my pine😂

cattaxi · 03/05/2019 21:58

Sorry you are going through this @mothersandsons.
We had exactly the same a few weeks ago. Nt of 3.9 at 13 weeks. We opted for the cvs because it screens for more stuff than the nipt and is diagnostic.
The procedure was slightly uncomfortable, but fine. Our consultant was fab & really put us at ease. I had the test on a Monday & the first results came back that Thursday. The full karyotype took 2 weeks. All our results were normal. We just have to wait now for the anomaly scan at 20 weeks & a cardiac scan at 22 weeks. It’s still a worry, but we are very pleased that so far our little boy seems ok.
It’s such a difficult time. I hope you also get some positive results.

Original poster
mothersandsons · 05/05/2019 17:44

Thank you for sharing @cattaxi. What were your initial odds are the NT scan and blood test (before CVS)?

Good luck with the remainder of your pregnancy. It’s a very stressful time Flowers

OP posts:
cattaxi · 05/05/2019 19:47

@mothersandsons we didn’t bother waiting for the bloods before having the cvs. They didn’t feel it was necessary due to the nt measurement and my age (39.)
I think we were 1/15 ds & 1/124 Edwards & patau when the bloods came back.

Thanks for the good wishes. I’m just trying to put it all to the back of my mind and enjoy the pregnacy a bit now. I had horrendous hyperemesis for the first trimester as well, so it’s all been very tough. I’m sure I’ll be veery nervous by the time the anomaly scan comes around, but worrying about that now won’t help.

Did you gave the cvs? Hoping for a positive result for you 💐

Original poster
mothersandsons · 05/05/2019 19:53

@cattaxi, thank you for sharing with me.
We had the CVS the same day, and haven’t stopped stressing since.

I’m sorry you’ve also had hyperemesis. I had two SCH before all of this. I’m praying for the results to be normal. That’s all I feel I have left!

OP posts:
cattaxi · 05/05/2019 20:32

@mothersandsons the wait really is he worst. When did you have your test? Are you getting the rapid result? Hopefully it won’t take too long.
I felt like the hospital staff were so negative. They made us feel like there was no chance of things being ok. 4.1 isn’t that large, you do still have plenty of chances that all will be fine x

WelshMammy123 · 05/05/2019 20:43

Hi. Sorry you're going through this. Have you heard of ARC? Think it stands for Antenatal Results Charity. They were so supportive when we needed them and well worth getting in touch with.

We had a NT result of 5.4. We had the CVS which was clear but they still suspected there was something wrong. At the 16 week scan they were able to confirm that our baby had a lethal skeletal dysplasia which meant she would survive to term but unlikely to survive birth and if she did, would pass away shortly afterwards. We made the hardest decision of our lives.

Even with an NT as high as ours though the odds were still in our favour that all would be ok - they just sadly weren't for us.

The waiting for results etc was horrific so I really feel for you - I would swing from being really positive to the depths of despair. I almost felt better when I knew what we were facing. I really hope you have a happy outcome and that you get that news soon x

Passthecherrycoke · 05/05/2019 20:45

ARC are brilliant. Good luck OP. Agree the wait is the worst Sad

Paddybare · 05/05/2019 20:52

We had several soft markers at our 20 week scan that we had to wait for results for and the wait is agony- I completely empathise and I’m so sorry you’re going through it now.

For me, turning the 1 in x chance into a percentage helped to calm me. For instance, your 1/24 is actually just over 4%, so there’s a 96% chance that your baby is all fine. Will be thinking of you OP, there’s a lot of support here if you need us.

Original poster
mothersandsons · 06/05/2019 02:45

@Paddybare were there no markers at your 12 week scan?

OP posts:
Original poster
mothersandsons · 06/05/2019 02:48

@WelshMammy123, I’m truly sorry for the very difficult time you must have gone through. I hope you have support. Here if you needed to chat...

May I ask if there were any concerning findings at your 12 week scan (other than for high NT)?

OP posts:
redbedheadd · 06/05/2019 04:37

We had an NT of 4.7mm ... we also had CVS and all clear. Baby som born 14 weeks ago and perfect , no health conditions.

Was a horrible horrible stressful time, really feel for you x

WelshMammy123 · 06/05/2019 07:44

@mothersandsons Hi. No other markers at the 12 week scan itself but they did a detailed scan at the same time as we had the CVS (a few days later) and they could see that there looked to be some issues with her skeleton. At the 16 week scan these were pronounced. So even though the cvs was clear, we still knew that there was probably something wrong. We just didn't know the severity or the impact these were likely to have on her.

So I would say that when I was where you are now I had a lot more clarity that something really wasn't right. From my experience the medics were extremely honest with me on their thoughts even before anything was definite. Hoping that as you haven't been told anything like that, all will be fine x

fabulous01 · 06/05/2019 08:14

We had cvs
12 scan and then referred
My care was amazing and I git results through. Not good news for me. The hardest bit was waiting
I really wish you well. ARC were fantastic

Hugs

zebrapig · 06/05/2019 08:22

We were 1:12 risk for Downs. Decided against any testing as I'd had 2 previous miscarriages and it wouldn't have changed our decision. DS is now 16 months and absolutely fine.