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Antenatal tests

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Original poster

NT 4.6 12 week scan

34 replies

notinthestarsigns · 20/04/2020 18:29

Hi,

I had my 12 week scan today. I had declined the combined testing but the sonographer told me that she had to check the NT as she could see increased fluids. It was all very scary and I didn’t really know what was going on, particularly given I was on my own and my husband couldn’t be there. I have been referred for an appointment with the consultant on Thursday when I will have another scan and if the concerns are still there I can have the harmony test on Thursday if I wish, albeit I will have to pay. This is my first pregnancy so I feel a bit all over the place right now, has anyone else been through a similar experience?

OP posts:
Jessie5 · 20/04/2020 20:33

Hi that must have been a really scary time for you, and very hard being on your own for the appointment too. My son had an NT measurement of 4.1mm at our 12 week scan, we weren’t prepared at all and spent a lot of time researching, we decided to have the harmony test which came back low risk for the 3 main trisomies. We then had a further heart scan at 16 weeks. We didn’t have an amnio. I found the ARC charity very helpful during this time. They have a good website and a really supportive helpline too. I hope all goes well with your consultant appointment, our consultant really helped to explain everything to us after the shock of our initial 12 week scan, all the best to you xx

Original poster
notinthestarsigns · 20/04/2020 21:33

Thanks so much for your reply. I think I will go with the harmony scan if the consultant concludes that the measurements are similar to the scan today. As you say the initial shock is tough, particularly given I then had to try and explain it to my husband when I got back to the car! Xx

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SylvanianFrenemies · 20/04/2020 21:37

Yes, this happened to me. In my case my baby boy had Down Syndrome and a lot of physical abnormalities and I ultimately had a termination.
I had the Harmony test, then the result was confirmed by CVS. In the same position again I'd go straight for CVS, but you need to do what is right for you.
I'm sorry you are going through this, and hope you get good news soon.

jmm499 · 21/04/2020 11:06

@notinthestarsigns so sorry to hear you’re going through this worry at this time 😔 Our baby had an NT measurement of 4.7mm at our 12 week scan. We had the harmony test which came back low risk and we then decided to have an amnio in case the increased measurement was due to another chromosomal issue aside from the main 3. This was also clear. We had a normal 20 week and fetal cardiac scan too 🙏🏻 I am 29 weeks now and so far things have looked ok as the baby has developed. Still feeling anxious but our consultant said increased NT can sometimes be one of those things.... I hope you get positive news over the coming days / weeks. Hang in there, it is a stressful time but you will find the strength to get through it. Take care xxx

Original poster
notinthestarsigns · 21/04/2020 12:33

Thanks for your messages xx

OP posts:
Balajake · 22/04/2020 21:58

Mine was 5.6 at 11 weeks so I opted for CVS. It came back for T18 so we didn’t have a happy ending. I will say that sometimes a high NT can be the only issue without chromosome problems and can resolve on its own . I wasn’t so lucky but it happens. Sending my best wishes and really hope you get good news

We are here for you though xxx

DrinkingInTheNightGarden · 22/04/2020 22:24

This happened to us back in 2016, DD is 3 now with no issues. We went straight for CVS due to the bloods and NT. On reflection I would have had a harmony test first to avoid the risk of miscarriage. We may try for another baby in the next year and I'd be wary of the 'probabilities' we were given. In fact I have said I would just have a harmony test anyway at our own cost.

Original poster
notinthestarsigns · 23/04/2020 04:04

@DrinkingInTheNightGarden thanks for your message. We have the appointment with the consultant today so I am here lying wide awake at 4am! I found out yesterday that the next hospital to us offers the NIPT on the NHS if you are high risk so that is a bit frustrating knowing that we will have to pay but if we had gone to that hospital it would have been free! Easy to say in hindsight though.

OP posts:
jmm499 · 23/04/2020 07:02

@notinthestarsigns thinking of you today ❤️ I remember those sleepless nights so well, I’m sorry you’re going through this Xx

DrinkingInTheNightGarden · 23/04/2020 07:19

Thinking of you too, at least with the CVS though we found out very quickly so there is something in that too plus is was diagnostic so we knew 100% what the results were. I searched lots of old threads on mumsnet at the time which was helpful.

Don’t think too much of the other hospital and the harmony test. See what the consultant says today and do update us. The very best of luck x

Balajake · 23/04/2020 08:34

I will say CVS doesn’t hurt really, just slightly uncomfortable and MC is much much lower than you think, like less than 1% and initially results for 3 main trisomies are back in 3 days.

Original poster
notinthestarsigns · 23/04/2020 14:54

Unfortunately it wasn’t good news for us today. The consultant picked up further issues than just the raised NT and so he didn’t think the NIPT test would be helpful. We are to go back for another scan in 4 weeks when he should be able to see what’s going on but there is a poor prognosis and, in the meantime, an increased risk of miscarriage as it looks like the gestational sac may be collapsing.

OP posts:
jmm499 · 23/04/2020 23:40

I’m so sorry to hear this 😔 Sending you lots of love xxx

Balajake · 25/04/2020 08:35

I’m so sorry @notinthestarsigns.
If you need anymore advice or help we are here for you 💕💕💕
Have they offered CVS at least

Original poster
notinthestarsigns · 25/04/2020 10:31

Thank you, I’m really struggling at the moment. They haven’t offered anything at the moment, just that they will review in 4 weeks and likely to offer amnio then if baby is still there.

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jmm499 · 25/04/2020 15:02

@notinthestarsigns 😢 that is a really, really hard place to be. Have you got any support in place - any counselling (via phone / skype)? Many recommended ARC to me when we were in limbo waiting for answers and test results - they’re meant to be very good even if you don’t know what to say / where to start. Thinking of you xxx

SylvanianFrenemies · 25/04/2020 15:28

@notinthestarsigns I'm so sorry. It just feels so hard and unfair. I really recommend ARC-UK. They are still running their (weekday) helpline if you need advice, or just someone to listen and understand as you cry.

Original poster
notinthestarsigns · 25/04/2020 15:29

No I haven’t been offered any professional support. The Fetal Medicine Unit said I can ring anytime if I have any questions but I don’t think there’s any answers anyone can give me right now, it’s more the difficulty in how to cope day to day at the moment. I have told a few friends and close family so that is helpful in terms of support.

OP posts:
Balajake · 26/04/2020 09:07

I would seriously demand a CVS test if it’s something you want. I think knowing exactly what’s going on will help you decide how to proceed. I couldn’t take 4 weeks of limbo. I really hope you get answers and I’m praying for you.
Just remember this is your body and your baby. They have to respect your requests

jmm499 · 26/04/2020 14:35

Yes I agree with @Balajake - I think a diagnostic test would be sensible as 4 weeks of limbo feels unbearable. I’ve been thinking of you as it must be a horrible time you’re going through. I was generally no more than 2 weeks away each time from answers - i.e NIPT and then amnio. 4 weeks does feel too long to make you wait to know anything further. Did they mention CVS? Xx

Original poster
notinthestarsigns · 26/04/2020 16:25

I was supposed to have NIPT yesterday but the consultant said given what he had seen on the scan he didn’t think it would be helpful at this stage. There was no mention of CVS, the only thing that I can think is that he didn’t want to do anything invasive at this stage because it looked like the gestational sac could be collapsing? He said that could recover and may not mean I am going to lose the baby but I guess if I had CVS now the chance of miscarriage may be even higher.

OP posts:
Original poster
notinthestarsigns · 26/04/2020 16:26

Sorry I meant on Thursday not yesterday, all the days are blurring into one!

OP posts:
jmm499 · 26/04/2020 17:36

Ok I see that would make sense especially if there’s a chance it could recover so he wouldn’t want to risk it... I really hope it does recover and you get some positive answers 🙏🏻 In the meantime, things that helped me a little in the wait was getting out for some fresh air each day and also using the Calm app for meditation / when I was finding it impossible to sleep. On Wednesday a week will have passed and you’re a step closer to getting some answers. I hope you are doing ok ❤️

Original poster
notinthestarsigns · 26/04/2020 19:44

Thank you @jmm499. It is really nice to have some support from women who have been through similar situations, as much as it is good to have family and friends as support, none of them actually have any idea what this is like. I managed to get a bit more sleep last night which has made a difference. I am just trying to get through each day at the moment and trying as much as possible not to torture myself by thinking about it all day everyday, although it is easier said than done! A few people have said they think I should take some time off work but if I can keep going with work I think that would be better as at least it is a distraction, although I am concerned that I will feel completely exhausted/drained so hard to know what to do for the best. I am working from home so don’t have to face everyone in person which is something.

OP posts:
welshmercury · 26/04/2020 22:39

Can you ask to have the combined screening that goes with the scan as that is only taking some blood from your arm?

We had NT, NIPT and CVS. Luckily NIPT was free as I chose the hospital I had my first child in rather than our closest one and the parking is better so it was just luck. Can you switch hospitals?

Sadly no happy ending as everything came back positive so tomorrow I will have my TMFR and am devastated.

In lockdown you need to find something to occupy your mind. I’m rebuilding all my sons Lego models as will sell them after lockdown over. Maybe start a cross stitch or sewing project as it occupies your mind. Though I have had many bed days where everything was just too much. So please do what you can and the time will pass.