High Risk NT

[CBhope]

Hi everyone,

I had my 12 week scan last week (when I was actually 13 weeks + 3) and baby had an NT measurement of 3.8mm, I never knew what this meant until now and I absolutely broke down. I was sent to Kings College Fetal Medicine Center the next day (who’s doctors were amazingly supportive) and they did a detailed scan showing an NT level of 3mm as the highest and 2.6 at the lowest. Everything else seemed fine on the scan for now. My bloods came back as 1:100 for DS and around 1:2700 for Edwards and Patuas. I am 25 so this is higher than expected.

We opted for a CVS and I am now in the agonising waiting game. I’m praying every moment I can, kissing my baby’s photo and I just feel so low.

I’m hoping to hear any positive stories that had the same indications and how long Kings took to call with the results? They’ve told me 3-5 working days, it’s now been around 4 days in total (including the weekend) and its just unbearable. I just want everything to be ok.

Honestly I think it’s going to be ok. 2.6 seems ok and 3mm isn’t awful. I hope you get your results soon as it’s a terrible situation to be in.
Mine was 5.6mm and cvs confirmed Edwards syndrome in my baby girl. There were things very visibly wrong on my scan and we terminated 2 days later.

Sending hugs and prayers you get a positive outcome ❤️

My heart goes out to you, I can’t even imagine the pain. You must be so strong. Thankyou for your kind words, I just worry about the 3.8. They had to take the highest reading and I’m just praying for the best.

It’s just a case of waiting and hoping. One you have the answers you can go from there

Hi, I went through a similar thing and was lucky enough to have a positive outcome. I did a lot of googling and all I seemed to find were lots of stories with sad outcomes so I hope this give you a little hope and helps to reassure you a little bit. During my first scan I was told the baby's NT fluid measured 6.8. I had my first scan at 10 weeks as I had a 3 week holiday planned and wouldn't be in the country when I was 12 weeks pregnant. Because of this I couldn't have a screening test as my pregnancy was too early and by the time I got home it was too late. I opted to have an amino but ended up having a CVS because of the lack of amniotic fluid. The results came back clear and the same for the micro array which was a huge relief. I also had a fetal heart scan that came back fine. When my DD was born she had a chunky neck at the back but that has now disappeared and we have a very healthy, happy 18 month old with no known health issues. I really hope everything works out for you too. x

Thankyou for your positive story, the only thing really getting me through is reading about the possibility of it being a good outcome. I already feel so connected to my baby. Could I ask how long your results took with your CVS? I had mine on Thursday but late in the afternoon. The whole weekend I was just googling and re reading every doctors note x

I had the CVS on the Friday and then I got my results on the Tues. I was told that I'd get my results within 48 (working) hours and if I hadn't heard anything by 4pm Tuesday to call them which I had to do. Maybe with the current situation things are taking a bit longer. I really hope they call you soon. I know how you feel and the waiting is so stressful. I remember feeling so sick with worry, time dragging by and checking my phone every 5 minutes to make sure I hadn't missed their call. And I'd convinced myself something was wrong. Hopefully they'll be in touch with you ASAP. If they haven't called you then it may be worth calling them just to check if they have your results ready.

Hi, I am in a similar position in that I am currently waiting for results after having an amnio last Wednesday. The NT on my 12 week scan was 4.6 so higher than yours. Fingers crossed for us both x

Hi notinthestarsigns, did you have your bloods done to go you a 1 in X probability? I really hope you get the all clear, the wait is agonising x

Thankyou, I will give them a call this afternoon just to see if they can give me any answers yet x

Mine was a little complicated - I had declined screening at the 12 week scan but was notified of the risk due to the high NT. I was then offered screening again but opted for seeing a consultant 3 days later with the possibility of having the harmony test then which would have been more accurate. When I saw the consultant he thought it looked like the start of a miscarriage and so didn’t think the harmony would be helpful. The plan then was for review in 4 weeks rather than any further testing, I think due to the concern that I would miscarry shortly after the appointment. When I went back to the consultant at nearly 17 weeks the baby was still there and she did a detailed scan. At that point her view was that there were no further issues other than the raised NT. She could not do an amnio then as the membranes has not fused. I went back a week later for another scan (last week) and the membranes had fused so I had the amnio. It has been a bit of a rollercoaster for us and we feel like we have been in complete limbo for such a long time now. The waiting really is awful and these last few days have been particularly difficult x

Hey @CBhope,

Sorry you're finding yourself in this position, the wait is awful!!

Did they give you your hormone levels for hcg and Papp-a?

1/100 seems scary at first, but the good news is that your NT measurement is included in this. It's not out of the range it should be, albeit a bit high. You've got a very good chance that the CVS will come back clear. I've got everything crossed for you.

Hi All,

Thankyou so much for your support I’ve been so low. Today the midwife rang and said my first results for T18, T13 and T21 have come back clear. They were most concerned about downs so thankfully that’s now ok. I just have to wait for my second results late next week, detailed heart scan at 16 weeks and 20 week anomaly scan. It’s like the worry will never end but the first hurdle has been crossed and I find comfort in that.

Did any of you find anything concerning in the second CVS results?

Notinthestars I will mention you and your baby in my prayers to get a good result xx

CBhope I am so pleased that your results have come back clear, what a relief for you.

Unfortunately it was not so good news for us, our baby has been diagnosed with T13 x

Oh my goodness my heart goes out to you. I can’t even find the words. If you want to talk, whenever, just drop me a message. Although incredibly difficult, try to hold on to that in every darkness there is light. I’ve been told ‘stay strong’ throughout this journey but please remember it’s ok to not always be strong and talk when you can, cry if you want to and find comfort in the joys in your life xxx

Hi - my NT was also 3.8. We opted for CVS and all came back clear. The second part of the report
took about 5 more days. We opted to find out the sex as I was feeling a bit disconnected with everything. I have the heart scan on Thursday. Feeling very nervous. Haven't really been able to tell anyone or buy anything yet so just praying all is ok and we can start to enjoy it all. Fingers crossed for you too x

@CBhope thank you so much for your kind words xx

I'm glad its going well so far. I too was going to say that the NT isn't excessively large and the fact there wasn't anything obviously wrong seen on the scan is great.

In my 1st pregnancy, I'd paid for the NIPT which showed T13. The NT was 6.5mm & there were obvious abnormalities on the scan which were consistent with T13. I had a TFMR.

Best of luck

Hi @Fredsgirl19,

Congratulations on your results. We have been told approx another 10 working days for our full results. Did you just get the call earlier or did you ring to chase?

I know how you feel it’s so hard to not worry but as my partner has said to me this evening, there has to be a point where you allow that connection with baby to grow and know that no pregnancy is risk free. I’m trying to cling on to the positives. If ok with you I would really like to know how it goes, I am sending you best wishes and positive energy for you and baby x

Hi @Elouera, I’m so sorry for your loss. Life can be so unfair at times, but there is good in the world and I hope some of that good has found its way back to you.

Thankyou very much for your positive thoughts, another hurdle down but still a marathon to go x

I’d say if those 3 are negative then that’s a huge win. So happy for you

If you had 3.8mm one day and then 3mm and under the next day, I’d say there’s a reasonable chance the higher reading was just plain wrong.

It happened to me. I was given 3.7mm at my 12 week scan which gave me a 1 in 11 risk of Downs. A specialist consultant scan the next day found the NT was actually 2.5mm! While NTs can shrink with time, but not usually that much overnight. They concluded that the first reason was just wrong and the amniotic fluid had been wrongly measured.

We didn’t want to risk a CVS so had the NIPT which came back low risk. Now just wanting to get the 20 week scan done and can hopefully move forward with enjoying this pregnancy.

I hope all your results come back without issue.

Hi OP, I am in a similar position at the moment (NT 3.7, cystic hygroma although seems to be resolving, 1:14 chance for DS, waiting for an amnio) I was wondering if you would be ok to update on your situation? Xx

My baby has a reading of 6-7mm on their NT fluid. It formed within 4 days of a healthy no concerns scan to a scan which brought my world down around me.

I am trying to get my CVS booked in now and I am praying for this baby to pull through whatever this is. All of the staff at the NHS were pushing towards no hope, but with my babys heart beating and their legs and arms flinging around, there has to be hope.

It is so unbelievably unfortunate and sad that we have to through this huge worry when this time is supposed to be the best time. I'm taking each day as it comes, hoping for the best outcome. There is cases of healthy babies but with chubby necks when they're born, there is cases where they heal themselves and there is hope for us all. Whatever the doctors say, we must follow our mum instincts xxx

Hello it’s me (CBHope - tried to change email ended up changing everything)

I’m so sorry to the posters above that I missed. I hope and pray you got the results that everything was ok.

It was the darkest time of my life, it hit me extremely hard and I cried for days but continue to worry even now. I now have my baby sleeping next to me and he is the light of my life, he could not be more perfect to me. He is very big for his age but that’s it. Although I do have very bad mama anxiety whenever I think something could be wrong and I believe it goes back to being told something wasn’t right at that scan. It’s very hard to shake off, almost like it feels to good to be true to have him.

I really hope this isn’t insensitive to any of you, I just wanted to give some hope to any future readers that there are positive stories.

Thinking of you all and your stories, it really is so hard