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Original poster

High NT

39 replies

HoneyPea · 06/01/2022 09:43

We went for our 12 week scan on Tuesday (13+2) and were told that our baby has a high NT of 4.9mm. Straight away they referred us to a consultant. Had a call yesterday to say I now have a consultant scan appointment in 3 weeks time. This seems so long away surely if NIPT or CVS is needed it should be sooner?
Has anyone had any experience with this and could possibly help with timescales/what happens next?

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rosed1008 · 06/01/2022 13:52

Hiya. Yes sadly I have had experience. You should have a screening midwife in your area who should be able to talk through next steps with. A lot depends on your area policies and how far along you are but they should be able to help. I got on first name terms and called them nearly every hour I think 🙈 but its their job to hand hold with you throughout this process.

And you are quite right you should be seen very quickly and given your options, 3 weeks sounds like far too long.

I hope it all turns out ok, it has every chance of being nothing.

Original poster
HoneyPea · 06/01/2022 17:35

Thank you for your reply @rosed1008 I'm sorry you have had experience with it.
I guess I'm going to have to wait for my combined blood results to come through then go from there. I was thinking it should be quicker based on what was said at the scan.

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westonx · 06/01/2022 18:01

Hiya - hope you’re doing okay - we have had a similar situation so understand how stressful it can be. We had to wait for our blood test results from the combined screening but they called within 2 days as we were considered high risk from the screening. We were called in to see screening midwife the following day - this was December 23rd.
We opted for the NIPT but they couldn’t fit us in until December 29th due to Christmas. We got our results back today and low risk.
Sending lots of love xx

Original poster
HoneyPea · 06/01/2022 19:38

Hi @westonx It is such a stressful situation. Im so glad you have had a low result from your NIPT. Were you offered the NIPT first before an amnio? Sonographer only talked about further test such as amnio. Did you have a high NT at the scan or was your high result just from your bloods?

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BabyOnBoard90 · 07/01/2022 01:39

@HoneyPea

We went for our 12 week scan on Tuesday (13+2) and were told that our baby has a high NT of 4.9mm. Straight away they referred us to a consultant. Had a call yesterday to say I now have a consultant scan appointment in 3 weeks time. This seems so long away surely if NIPT or CVS is needed it should be sooner? Has anyone had any experience with this and could possibly help with timescales/what happens next?
I wouldn't panic just yet if everything else on the scan presented as normal.

Easier said than done I know

Rrrob · 07/01/2022 01:54

I had this too. I was rushed in the next day because cvs needs to be done before 14 weeks (and I had original scan at 13+5) and amnio is after 16 weeks. I had a detailed scan by the consultant who couldn’t see any abnormalities so suggested the nipt which we had to pay for. Could you get the nipt done privately now?

Original poster
HoneyPea · 07/01/2022 20:31

@Rrrob

I had this too. I was rushed in the next day because cvs needs to be done before 14 weeks (and I had original scan at 13+5) and amnio is after 16 weeks. I had a detailed scan by the consultant who couldn’t see any abnormalities so suggested the nipt which we had to pay for. Could you get the nipt done privately now?
I hope everything went well/is going well with your little one now? I will definitely look into a private NIPT, thank you for the suggestion. I have got a consultant appointment next Thursday (14+4) that was scheduled before my 12 week scan so I'm hoping they will be able to tell me more. I was just expecting to have heard something by now as with my age (35) and the NT I'm sure I'm most definitely very high risk and I thought they told you within a few days if you were classed as high!
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Original poster
HoneyPea · 07/01/2022 20:32

@BabyOnBoard90 Thank you x

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Babylird22 · 09/01/2022 15:14

Sorry you're going through this @HoneyPea. Just thought it may be worth mentioning depending on your area you may be able to get NIPT on the NHS. I got a call last week (just over a week after my scan & bloods, but obviously there's been new yr etc) advising me that my scan was fine but my bloods gave us a 1 in 35 chance of DS. We went to the fetal medical unit expecting a CVS but they were really lovely and suggested the NIPT instead which we didn't have to pay for.

Also, it could well be that your bloods are fine if you haven't heard. If you do get the call, try to focus on the percentage rather than the figure. Our percentage chance of DS is 2.86% which sounds so much more positive than 1 in 35, so just bear that in mind too Smile

Original poster
HoneyPea · 10/01/2022 19:24

@Babylird22 Thank you for your reply, I am sorry you are going through this too. I had the call today 1:7 chance for DS (14%). I'm sure I'm past a CVS (14+1 today) Got an appointment to see the screening midwife on Thursday afternoon but we are thinking Amnio so we know for sure but may change our mind after talking to her will have to wait and see.
Have they said how long you will have to wait for the results of your NIPT?

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Georgii22 · 12/01/2022 12:58

Just looking to see has anyone been through this. I'm 16 wks pregnant with twins, its my first pregnancy. I was told at my 12 week scan that something doesn't look right with twin 2 and there was extra fluid at neck. Consultant said it might be patau, edwards or down syndrome. They recommend a CVS test and so I went for that. Literally just got final results on Monday this week and all results are clear which we were obviously delighted about.

They brought me in for a scan yesterday, I'm now 16.5 weeks pregnant and unfortunately we were told the fluid has increased- its around the neck and lungs. They don't know why or what is going on. Consultant said it could be many different things and wants me to prepare for the worst. He said twin 2 is really struggling, there may not be a heartbeat next time I go in for my scan. I'm just really overwhelmed and confused by all of this. The news is all so negative. Twin 1 is doing great and I'm really thankful for this. I asked was there a chance fluid will reduce and he said unlikely.

Has anyone been through anything similar after a clear CVS? I just don't know how to cope.... is there any hope here? Any advice would be much appreciated.

Babylird22 · 15/01/2022 12:18

How did your appointment on Thursday go @HoneyPea? Hope it went ok. We waited a week until we got our results yesterday, but we're told it could have taken up to 2 weeks. Everything came back fine which was a massive relief, not that the baby would have been loved any less either way, but the wait was not nice.

Keeping my fingers crossed that your amnio went / will go well.

Babylird22 · 15/01/2022 12:23

I can't say I've been through this but hope everything is ok @Georgii22 sending lots of love

Hyppogriff · 15/01/2022 12:31

Sending you positive wishes.
OP 3 weeks does sound like too long to wait - I would definitely look into going private to lay your kind at rest.
PP with twins - no experience of that but wish you well.

Original poster
HoneyPea · 15/01/2022 14:57

@Babylird22

How did your appointment on Thursday go *@HoneyPea*? Hope it went ok. We waited a week until we got our results yesterday, but we're told it could have taken up to 2 weeks. Everything came back fine which was a massive relief, not that the baby would have been loved any less either way, but the wait was not nice.

Keeping my fingers crossed that your amnio went / will go well.

Thanks for asking. When we went on Thursday it seems my bloods were ok so it was mainly my age when baby will be born (36) and the NT which have us the 1:7 chance. They said I was too far along for CVS and not far enough along for an Amnio yet. So seeing as I've got to wait until 16weeks (about a week and a half) we opted for a NIPT in the meantime. They are hoping the results will be back in time for the detailed consultant scan we have on the 24th.

How were the results of your NIPT if you don't mind me asking? X

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Original poster
HoneyPea · 15/01/2022 14:58

@Babylird22 sorry didn't read properly, glad everything came back fine x

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Original poster
HoneyPea · 15/01/2022 15:00

@Hyppogriff

Sending you positive wishes. OP 3 weeks does sound like too long to wait - I would definitely look into going private to lay your kind at rest. PP with twins - no experience of that but wish you well.
Thank you, luckily they did a NIPT at the appointment we went to last Thursday now to wait for the results x
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Original poster
HoneyPea · 15/01/2022 15:01

@Georgii22 That sounds like a tough situation. I hope everything is ok at your next scan x

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Babylird22 · 15/01/2022 18:04

[quote HoneyPea]@Babylird22 sorry didn't read properly, glad everything came back fine x[/quote]
Thank you, and fingers crossed your NIPT results come back as soon as possible, I know how difficult the wait is xx

Blondephantom · 15/01/2022 18:18

I had a pregnancy where the nuchal measurement was 5.6. We were given a one in five chance of edwards, pataus or downs. I had a cvs and the results were clear. There was extra monitoring for heart abnormalities later on. My little girl started school this year and is thriving.

I know how anxious the wait is but I found it a comfort to change the statistic around. Four out of five chance of everything being fine rather than one in five of an abnormality. It helped to an extend but I was a wreck until I had an outcome from the tests.

Blondephantom · 15/01/2022 18:19

Sorry, I forgot to say sending you lots of best wishes for an outcome as amazing as mine!

Original poster
HoneyPea · 15/01/2022 21:07

@Blondephantom

I had a pregnancy where the nuchal measurement was 5.6. We were given a one in five chance of edwards, pataus or downs. I had a cvs and the results were clear. There was extra monitoring for heart abnormalities later on. My little girl started school this year and is thriving.

I know how anxious the wait is but I found it a comfort to change the statistic around. Four out of five chance of everything being fine rather than one in five of an abnormality. It helped to an extend but I was a wreck until I had an outcome from the tests.

Thank you, it is so lovely to hear a positive outcome I'm really glad your little girl is doing well. The waiting is already killing me but fingers crossed we won't have to do more waiting for Amnio results after. X
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Original poster
HoneyPea · 23/01/2022 16:04

Just to update as I've been reading so many threads from a long time ago which have had no conclusions. NIPT came back high too so having an amniocentesis tomorrow.
Not felt any movement for a few days and my bump seems to have disappeared (at least half the size this morning 🥺)

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jmm499 · 24/01/2022 08:39

@HoneyPea so sorry to hear you’re going through this 😢 Sending you love and strength and hope today goes ok Xx

MrsElijahMikaelson1 · 24/01/2022 08:48

Try not to worry-I had an amniocentesis with DD and they are so much better than they were. Either way, you will know and be able to make choices. We were fortunate in That DD was fine so hoping the same for you x