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Help - NT results 3.8mm

(27 Posts)
Sian868 Fri 21-Apr-17 18:40:12

Just basically looking for some reassurance or advice or kind words!
I had opted out for downs screening but at my 12week scan today the sonographer said because the fluid behind the baby's neck was so prominent she was under a duty to measure it and let me know. We were then taken to another room to have it explained to us and I'll be honest, the doctor didn't sound very positive! I had blood tests and will know results next week then be offered amniothesis.
I am panicking. I am 30 and have healthy 4 year old boy so had naively assumed all was going to be well and now I feel so worried that there is something seriously wrong with the baby! I just can't stop crying even though I know it is silly and we will love the baby whatever happens and I guess there's still chance it could still be better ok...Anyone have any similar stories to share and what outcome was? X

SeahorseBlue Fri 21-Apr-17 21:03:58

Hi, I also had my 12 week scan today, the NT measurement was over 6.5mm. Have you been offered an appointment with Fetal Medicine? We have an appointment next week.

Sian868 Fri 21-Apr-17 22:26:35

Hi Seahorse, I'm sorry to hear you are going through similar. It's very stressful isn't it? They said they will book me an appointment with fetal medicine once my bloods are back. I guess then it's to discuss the amniothesis test etc. Will you have that do you think? Hope you're ok. I'm trying to think positive I've been reading lots of posts where people have been given really high risk results but then baby absolutely fine so hopefully that will be us both smile

GreedyDuck Sat 22-Apr-17 08:32:57

I'm sorry you are going through this as well. I had my 12 week scan on Wednesday and the nt measurement was 4mm.

I am having a CVS first thing on Monday. Tbh, the fetal medicine woman I spoke to, and sonographer gave me absolutely no hope that it would be ok, this is without even having my blood results. I think this is because the foetus was also measuring 5-7 days behind (which as I tested positive very early, is not great). If your baby looked otherwise ok, I wouldn't assume the worst just yet.

I actually feel as though I'm going slightly mad waiting for answers. I am not coping well at all. I had a mc at Christmas as well and I'm 43, so I feel like this is the end of the road for us. Thankfully I do have a 2yo dd, but my heart is breaking.

Sian868 Sat 22-Apr-17 09:45:44

Hi Greedyduck. I'm so sorry you're going through this too and for your recent miscarriage. It is just heartbreaking.
I just want to know what the verdict is so if it is not good news, we can prepare ourselves as at moment I just feel in limbo and I'm assuming the worst (as doctors seem to be!). I literally haven't stopped crying so I just need to pull myself together now I think. This baby had taken such a long time to conceive and I had just given up hope when it happened so I'm absolutely gutted to thing anything is now wrong.
That's good that you have cvs on Monday and things are moving quickly. There is still a chance things will be ok so keep positive (easier said than done I know!) x

GreedyDuck Sat 22-Apr-17 10:32:41

Thank you. The waiting is so hard isn't it? I am doing a lot of crying too and dd is watching a lot of Peppa Pig. Dp is supposed to be running the marathon tomorrow so I'm feeling incredibly guilty about falling apart this weekend.

SarahOoo Sat 22-Apr-17 10:37:17

Hi ladies, I don't know if my post will help or not but wanted to share. Firstly the Drs can be very negative quite quickly when they see a higher NT. I've just fed my 10 day old baby girl who had a higher NT of 3.4mm back in October. We had the CVS and all was clear but the waiting was awful. I remember the Dr talking of termination at one point, it was so overwhelming.

Our bloods weren't where they should be and with the NT measurement our risk of a chromosome issue was 1:85 and 1:78 (T21 and T13/18).

Coming on here really helped me through, I still don't know what we would have done if the result did show a chromosome issue.

All I can suggest is try to keep a level head during the waiting game and speak to your partner or close family, this really helped me through. The absolute best wishes to you all.

Sian868 Sat 22-Apr-17 19:25:30

Thanks Sarah, it's good to hear stories where the outcome has been positive!

Greedy, don't feel guilty for falling apart. It's tough this waiting game. My DS has spent a lot of time on the IPad today as I keep just crying randomly and having given myself a migraine with it all. My Oh has been great and being very optimistic whereas I am struggling to be. I am feeling a little better now though and just trying not to think about it too much. Have you told anyone about it? I have told some close family members and it's helped to share it and feel a bit less alone in it all x

SeahorseBlue Sat 22-Apr-17 22:10:15

Hi Greedyduck and Sian. I am trying to carry on as normal at the moment. Greedyduck, did they offer you the non invasive blood test (NIPT)? Good to hear you are having the cvs on Monday, hopefully you will have answers then.

We have an appointment with Fetal Medicine on Wednesday, they have told us we will have a detailed scan. At the moment after discussion with DH, we are hoping to have the NIPT and depending on the result, will then consider cvs.

We also experienced the Drs being quite negative immediately, but I thought this was due to the NT result being so very high, (over 6.5mm), yours are both lower than that, so it's sad to hear the Drs were not a bit more positive.

Our blood results were also bad, greater than 1:5 chance for downs and 2 other chromosomal abnormalities, (Not sure which, I didn't take it in), so to be honest at the moment I am assuming the worst and trying to come to terms with that.

Sarah, thanks for your comments, how did you find the cvs if you don't mind me asking? I don't know anyone who has had it and I'm quite needle phobic.

SarahOoo Sun 23-Apr-17 11:17:08

Hi SeahorseBlue, I didn't like it at all and had tears throughout but had to keep very still. The needle going in was fine as they give you local anaesthetic for that area but the feeling when it's in you is very strange and uncomfortable, many ladies on here who have had one were totally fine though. Must stay rested for a couple of days after though.

In comparison to other situations I've had (kidney infection and labour) the CVS was a breeze, the waiting after is worse as it's the unknown.

Do let us know how you get on and please do search for old threads on here as ladies with similar odds (and that is all they are at this stage) have also had positive outcomes.

Katiep0tato Sun 23-Apr-17 18:03:56

Hi all - came home earlier today to find a letter from the midwife saying our risk of ds is 1:76. This is from blood test only, couldn't do NT as I was measuring 14+2 at my scan last week (so 15 weeks today). I have an appointment with fetal medicine tomorrow to discuss further. Even that seems like an age away, lots of tears this afternoon and don't think I'll be getting much sleep! I'm 36, first pregnancy.

Nothing helpful to say really, just that I'll be thinking of others in the same (or similar) boat and hoping for the best.

Sian868 Sun 23-Apr-17 18:25:01

Hi Katie, sorry to hear you are feeling so low about your results. I know that that puts you at high risk but when you think about those odds, they are actually pretty good 75 babies out of 76 will be absolutely fine! So try not to be too disheartened. Will you have an amnio to get a definite answer? Did everything else look ok at the scan?

The more I have had time to think about things, the less stressed I am feeling about it all. I have been reading about parents of Down syndrome children and I am beggining to feel a bit less overwhelmed by the possibility and that perhaps, even if that risk does materialise it wouldn't be the end of the world. I guess I am more worried about other abnormalities as the doctor said the nt size could indicate heart or other structural problems too but I guess we won't know about those for a few weeks yet until they do another scan.

That's good news that you have your apt so quickly though and so hopefully the wait for answers won't be too long x

Katiep0tato Sun 23-Apr-17 18:54:29

Hi Sian thanks for the reply. Everything else looked OK at the scan - the sonographer didn't mention anything, just said couldn't do NT.

It does give me hope seeing others on MN with higher or similar odds after screening who have then had diagnostics come back clear and gone on to have perfectly healthy babies, it's just a big shock. I'm trying my best not to catastrophise!

Leaning towards an amnio, the midwife I spoke to earlier said I might even be able to have that tomorrow. Must say in comparison to PPs' experiences she was very supportive and stressed the probability of all being OK.

GreedyDuck Mon 24-Apr-17 06:44:45

Yes, I've told the people who knew I was pregnant, and they've all been wonderfully supportive. We also told dp's family, as they didn't know. We'd been hoping to tell them after the dating scan. His dad died a couple of months ago and we thought this would be a welcome bit of good news.

I wasn't offered NIPT, seahorse, we had weighed up getting it done privately at 10 weeks, but I was still convinced I would have another mc at that point, so put it off. I had the Harmony with my dd and it was very reassuring. I don't think they think there is any point because of the measuring behind aspect this time.

CVS at 9.30 this morning and I am dreading it.

Sian868 Mon 24-Apr-17 08:28:32

Hi Greedy, good luck today will be thinking of you. Let us know how you get on x

SarahOoo Mon 24-Apr-17 10:40:01

Hope the CVS went as well as it could GreedyDuck

SeahorseBlue Mon 24-Apr-17 11:44:17

Greedyduck, I hope the CVS went ok and you have the results soon.

Katie, I hope your appointment with Fetal Medicine goes well today.

Sian, will you get your blood results today?

We can only wait at the moment, our appointment with Fetal Medicine isn't until Wednesday.

Sian868 Mon 24-Apr-17 12:07:18

I'm not sure to be honest. They said if bloods were bad they'd get them either today or tomorrow. But if they were ok, it might be later in the week. From reading other people's posts though I had thought that the high NT reading would automatically result in my combined result being high risk... I was in such a fluster after the scan I didn't ask all these questions i now have! So although I want to know what my results are I'm trying to be patient on the basis that no news hopefully means better odds!

GreedyDuck Mon 24-Apr-17 12:55:43

They couldn't do the CVS as the placenta is posterior and my bowel is in the way. I going back next week for another try. If not we have to wait until I'm 16 weeks for an amnio.

The baby is still measuring a week behind and my hormone levels were through the floor. Papp A. and Beta HCG were 0.2 and 0.1 (MoM). It also has a small exomphalos containing the bowel, and a single artery umbilical cord.

They gave me a 1 in 3 risk, and suspect Edwards or Patau. We have been given the option to end the pregnancy surgically now, but we won't get any detailed answers as to what the issue is/was.

I just don't know if I can cope with another three weeks of uncertainty and then a medical termination. The thought of being induced at 17 weeks terrifies me, as does the prospect of a miscarriage in the meantime. I'm not sure I can terminate without a definite diagnosis though.

Whymeagain1 Mon 24-Apr-17 13:25:30

Hi, just to say I'm so sorry to see others are also in this awful waiting game. I had an NT of 3.5mm at the dating scan, to complicate matters I had already had the Harmony test which had come back low risk, so very confused and concerned as to what has caused this. Consultant's advice is wait for the detailed scan (he is doing this himself) at 19 weeks and I'm having a fetal heart scan at 20 weeks. The waiting and worrying is the worst. I'm nearly 17 weeks now. I'm just existing day to day, willing the time away. I have an anterior placenta so no movements yet which is also concerning (my living children are older so can't remember when I first felt them).

@greedyduck last year I sadly had a termination for medical reasons, after a poor prognosis following a diagnosis of a chromosomal abnormality. The NT measurement for my son was normal but my bloods were out. If you want to ask any questions, I will answer them as honestly as I can. The charity ARC are fantastic, if you want to talk through options and your feelings with someone, they are very knowledgeable.

GreedyDuck Mon 24-Apr-17 13:35:03

Thank you Whyme, I'm sorry you are having to go through such a worrying time again.

RonBurgundysMoustache Mon 24-Apr-17 14:01:02

Hi ladies, so sorry there are so many of you going through that god awful period of waiting..

At the dating Scan of my third pregnancy we had a NT measurement of 3.6mm everything else looked normal from the scan but we were taken into the room for an in depth chat with the specialists I had the results from my bloods and these combined have me a 1/86 chance of downs not so high for Edwards or Pataus but they couldn't rule it out. We had the harmony test the next day and were told results would be back in 7/10 working days. The wait was agonising I had a mmc before this pregnancy and the though of potentially losing another baby was excruciating. I had a call 5 days later to tell me the results were back and my new results were 1/10,000 for all trisomys it was honestly the best call ever. I had to have a detailed heaet scan at 19weeks and again all was ok and my anomaly scan revealed the fluid measurements were still higher than average but they were happy this was just one of those things. My dd was born @40+12 weighing a whopping 9lb 5oz and have been told since this may have been why her readings were higher she was just chubby! She is now 22 months and thriving.

I know not all stories end as happily but please don't lose hope, it still can turn out amazing. I will be thinking of you all, and will hope you all have good news flowers

Katiep0tato Mon 24-Apr-17 15:19:32

Oh Greedy what an awful thing to have to go through, my heart goes out to you and DP.

Sian hope you get your blood results through sooner rather than later.

I'm home now having had an amnio after this morning's appointment. Should have results back by Wednesday. Have to take it easy for the next couple of days too.

I'm super-impressed with how quickly my NHS trust has addressed this and the midwives at fetal medicine couldn't have been more supportive. Just hoping for a good result now.

Thinking of everyone xx

Sian868 Mon 24-Apr-17 17:51:49

Greedy, so sorry that you're having such an awful time, it's just bloody heart breaking.

Ronburgundy thanks for the response it's reassuring to hear of some positive outcomes.

Katie, that sounds really good that it's all happening so quickly. Hopefully you'll have some good news on Wednesday and this state of worry will all be over for you! X

Katiep0tato Tue 25-Apr-17 17:19:36

Just had a call from the hospital - results show no evidence of T13, T18 or T21, so all clear for chromosomal abnormalities. Such a huge relief!

Still have to wait a couple of weeks for full results including genetic conditions, but no history on either side.

Any more news for you yet Sian?

Thanks to all of you for listening and for your support xxxx

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