To NIPT or not?

[deliwoman1]

Missed a call from my hospital last week Friday that sent me into a tailspin thinking it was 'bad' news from my 12 week screening test. I was kind of expecting it because I'm 41. Some lovely people on MN reassured me. Got home on Sunday to find they'd sent the results in the post: overall low chance, no further screening from them. Less than 1 in 5000 for Down's, Edwards and Patau. Not as low as with my DD three years ago but a very good result considering. Broke down immediately. Still no bloody idea why they were calling me and angry with myself that I let my anxiety get the better of me!

Now we're wondering whether to do the NIPT privately. I had the tests done at 11+5, and am so happy with the overall results, but my age-related risk is 1 in 77 and it has cast a bit of doubt...

Other measurements are:

NT measurement: 1mm
Free beta hCG: 0.64 MoM
PAPP-A: 2.08 MoM

Would you still get the NIPT done for peace of mind? DP has surprised me by saying yes. He's normally a lot less risk averse than me and I thought he wouldn't see the need to spend the money!

Hi OP,

I had a similar experience with my numbers and was feeling the same. I paid privately to have it done and so glad I did... I had peace of mind straight away from my results and have enjoyed my pregnancy since. If you can afford it and you think it will bring you peace of mind then go for it!

I'm sure all will be fine but I understand the worry attached to the numbers. Good luck with your pregnancy! 🤍

I get an automated phone call to remind me of upcoming appointments, could it have been this or did they leave a voicemail?

If it was something concerning/alarming I would imagine they would have tried to make further contact since, however have you tried contacting your midwife or even triage and discussing the missed call and at least then they can look into who was trying to contact you?

In answer to your private screening question - this is obviously causing you anxiety/worry/stress which is a huge factor in going for further screening. However, the main question I would be asking myself is that what answers or reassurance do you think private screening will bring that your first screening hasn't?

Please be kind to yourself 🩷

Pregnancy is such a stressful & anxiety inducing time, so I think you should do whatever will give you peace of mind! So get the test done as it’ll reassure you. I’m 41 and 7 weeks pregnant and already have my NIPT booked in for 10 weeks, before my NHS tests.

Do what overall will cause the least stress, especially if you wouldn't complete the pregnancy. It doesn't matter that I wouldn't bother in your shoes, it's not my pregnancy

Thank you! @TallulahTaboo I'm so glad your results enabled you to enjoy your pregnancy. I'm kind of hoping for that too. It's been a bit of a rollercoaster so far. I've recently been exposed to slapped cheek (DD has it) and bloody Covid too, so it seems there's always something to be worried about! I think we will go for NIPT. Fingers crossed it doesn't blindside us and that'll be one less thing to think about.

@Twinklydreamer22 definitely not automated - my hospital doesn't do that as far as I know and I recognised the number. Contacted my MW yesterday about slapped cheek but she is about 12 and useless. Didn't know who called or why (and didn't even know I needed to be checked for immunity re. the slapped cheek 🙄). The hospital haven't called me back, so who knows? Maybe it was to discuss the age-related risk element.

I know the NIPT is considerably more accurate in predicting risk than the combined screening test, and would've got it at 10 weeks, but did want the NHS to check me, mostly to raise any concerns with low PAPP-A. I'd be reassured by a low chance NIPT for sure. Especially along with the combined result.

@AnnieStar12 smart move. Good luck to you!

@SleepingStandingUp Thank you. Couldn't decide if I was 'giving in' to madness, but you're right.

Hi Op,
I'm also thinking of having the NIPT, despite being 32 and low risk from the screening results.
My reasons are I'm much more anxious this time and with it being my third baby I want that extra bit of confirmation.
I think your reasons are your own and you should do whatever will help your anxiety so go for it.

I'm laughing at the my midwife is 12 comment 🤣

I hope all goes well and by the sounds of it you have decided to go with the screening - if it brings you peace of mind then it's worth it! The anxiety/stresses that we feel while pregnant are on a whole new level 🤯

@deliwoman1 just to say that I think a lot of NHS trusts have revised the way that they report risks in the last few years so 1 in 5,000 is always the lowest risk they will give you. So that might be why it's different to your other child. It sounds like that won't affect your decision re NIPT but thought it might be reassuring to know you likely have lowest possible risk by their measures

I had the NIPT test done in my current pregnancy and my previous pregnancy at 10 weeks. It definitely gave me peace of mind.

Thanks @malimoon! That is helpful. With DD it was less than 1 in 5000 for Down's, less than 1 in 16,000 for Edwards, and less than 1 in 50,000 for Patau. That was late 2021!

A different perspective OP from being on the other side.
I'd TTC 4yrs and finally got pregnant at 38. I paid for the NIPT at 10 weeks, so before the 12 week scan. Unfortunately, the test showed patau syndrome. They called me back the following day for a more detailed scan.
NT was 6.5mm and there were very obvious deformities on the scan- cleft face (not just a cleft lip), large hernia, shadowing on the brain and more. I chose TFMR and the autopsy/histology confirmed the diagnosis also.

Your NT was normal and presumably the scan was too- which is great. Your chances are also extremely slim- you have a 1 in 4999 of everything being normal. Its obviously your choice whatever you decide. Happy to answer any questions if you have them x.

I’m 37, and had NIPT as knew I’d be stressed the rest of my pregnancy if I didn’t.

if you can afford to do it I think it’s worth it for peace of mind xx

I was 37 having dd2 and had nipt. Worth it for peace of mind and I also got to find out for the sex early

1 in 5,000 is the lowest score you can get now, they have changed it compared to previously - so you've got fantastic scores! Also great NT measurement etc - I don't think a NIPT is necessary but it's your money and your choice!

@JC03745 thank you for sharing. I'm so sorry for your loss. 💐I'm very fortunate to be very low risk as far as the NHS is concerned. I think having carried the expectation of a poor result around with me all this time because of my age is the thing that's pushing me toward further confirmation. I can't quite believe and accept 'good' news.

It's a tough one isn't it, I gave birth to my youngest at 41, and we had the NIPT with her, I didn't have the NHS screening done at all, the NIPT told me that my age related risk was around 1:43, but the NIPT results were 1:10,000, for me it put my mind at rest and I have no regrets in paying to get it done.

The NHS don’t give odds any lower than 1:5,000 any more.

Doing the NIPT was amazing for my mental health, but if your odds are all 1 in 5,000 then that is the lowest chance the NHS offers so it would just be a waste of money!

Have you spoken to your midwife/GP about slapped cheek exposure?

Under 20 weeks they should refer you for a blood test and also (depending on outcome) a fetal medicine appointment. Here the consultant will do a very detailed scan, at which point the NIPT may be a little redundant?

There has been lots of slapped cheek around this year, and a good few threads recently which also might be worth searching for reassurance and advice (I contracted it at 19w, and fingers crossed all is well but I have been very well cared for and monitored by my local hospital)

I would get it done, for sure. Mainly age related but it will also give you peace of mind.

I've got NIPT booked in end of this month and still going despite low chance result, just for peace of mind.

Had NHS combined screening (1/5000 for ES and P and 1/2950 for Down's - both low chance result). I'm 38.

I'd say go for it, if you're worried it'll put your mind at ease.