To NIPT or not following Combined Test results?

[RestingAnxiousFace]

Hello lovely MN,

I'm 37 and currently 14w into my first pregnancy. I'm a worrier by nature and I'm having trouble deciding whether to go for a NIPT test or not following my combined test results, which came back today as:

T21 - 1 in 2400
T18 & T13 - 1 in 5000

I'm aware I'm lucky to have received these low risk results, but the anxious part of me is telling me to go for the NIPT anyway, just so I know I've done everything within my control to be as informed as possible. However, there's another part of me that's telling me there is still so much out of my control that can't be screened for, and I should be happy with these results, stop worrying and start enjoying my pregnancy.

My husband is keen to start telling family now we've had these results, but I've asked him to wait until I make a decision on the NIPT or not.

What would you do in my situation? AIBU to want to go for the NIPT anyway or should I be satisfied with these lower risk results?

Thank you x

If your thinking about it, just get it done? I take it they aren't high risk enough for the free NIPT on NHS?

I'm personally planning on getting NIPT screening before the NHS combined screening but I'm also 40 so possibly higher risk.

I don't think those results are too worrying tbh but the NIPT screening is more accurate.

Me personally if I had those results I wouldn’t have the nipt as wouldn’t feel the need.

@RestingAnxiousFace no I wouldn't with those! Those are really low risk...

The nhs here won't do the NIPT test unless you get less than 1 in 350 or something and even then most of those will come back fine on the NIPT you'd just be wasting money, BUT if it's the only thing that will settle your anxiety then just do it

also if the NT measurement was fine which it must be with these results then that's a good sign it'll be even more accurate!

Hi @RestingAnxiousFace I'm also 37 my results came back a bit lower than yours and I opted for the NIPT. I do have anxiety and I choose to have the extra reassurance that the NIPT provided (although I know it's not 100%) a bonus is that you can find out the sex from the NIPT too. I had it done at my local hospital with my consultant and he did a detailed scan begire hand too which reassured me too. It's pricey but because I had it I haven't ended up paying for extra private scans for extra reassurance which I would have done if I didn't go for the NIPT.

Good luck with whatever you decide.

NIPT is supposedly more accurate (neither is diagnostic and someone has to be the 1, whether it’s 1 in 2 or 1 in 10,000), but it sounds like there is literally nothing in your results that suggests it’s needed, especially given your age which I’m told pushes the chance of Down syndrome up a lot. I’m your age and have been given a 1 in 2 chance from the screening and now under foetal medicine for more investigations. Personally, I would kill for even a 1 in 100, let alone 1 in thousands - as would a lot of women on these threads - and would love to just be able to enjoy my pregnancy instead of enduring more tests, uncertainty and wait for results.

I appreciate that pregnancy is hard with anxiety as everything is out of our control really and that’s very anxiety provoking but you can’t plan for and screen for every eventuality.

You won’t get a NIPT on nhs and will have to pay around £500 for a private one. If that makes you feel better, go for it, but once it comes back low chance you might well be on to worrying about the next thing then if you’re anything like me.

Please bear in mind that as you are classed as a low risk sub group, this would reduce the accuracy of NIPT in terms of Positive Predictive Value (PPV). This means that if you were to have a high risk result, there is a higher chance this result would be inaccurate and you would have no way of knowing without diagnostic testing.

What would be your driver for having a NIPT? Given you are already classed as low risk, the best possible outcome would be that you would continue to be classed as low risk - but it seems this label has done nothing to alleviate your anxiety to date. So would NIPT provide you what you want?

You could face either of these outcomes moving forward:

• continue to be classed as low risk.
• be wrongly classified as high risk (which is more likely than not with NIPT in low risk sub groups) and have no way of knowing this without diagnostic testing.
• you could get a high risk result which indicates a genuine issue with your baby. Then you would face the choice of diagnostics and further decisions that would likely flag later in pregnancy such as an anomaly scan.

I suppose it is worth thinking if these are your aspirations moving forward or if you’re happy in the current context.

I think pregnancy is a very worrying time and you’ll likely feel this way about lots of things. I had a 1 in 38 chance of Edwards and Patau’s and that feeling after the call was like no other. Why don’t you invest in some good hypnobirthing classes? They’ve honestly helped me manage worry in all different situations, not just labour.

Just to update my earlier comment, my results came back today and they were 1 in 280 for T21 and 1 in 5000 for the others.

Our NT was 2.7.

Still not having an NIPT as for me those odds are still less than 0.5%

Mine was 1 in 200.
Had the nipt.
Massively reassured me.
Not sure whether I would at your numbers but equally if you can afford it, it really helped me settle.

Hi everyone,

Thank you very much for taking the time to reply.

I'm aware this is a very emotive subject and firstly want to apologise if my question seemed insensitive to those who are undergoing the stress of receiving much higher risk results and further testing. @Bloodystressed1 I'm keeping everything crossed for you and sending lots of love. You're totally right that the anxiety will find something else to latch onto soon, it's really hard knowing the best way to manage that, isn't it?

@SJG1987 I'm sorry you had to go through receiving those odds, and will definitely look into hypnobirthing, thanks. I have counselling for my anxiety but pregnancy has really taken it into another dimension...

With that in mind, I made the decision to just go ahead and get the NIPT yesterday (I'm in London so could get one same day for £250). My gut was telling me that I would be more reassured by a low risk result from the NIPT than the combined screening, as it's based on DNA rather than an algorithm (albeit a mostly successful algorithm) - I feel the same as both @Furnitureelf and @Lonestar1988.

I also have a history of another rare genetic disorder in my family (first cousin), which the NIPT I found also tests for, so again I know I'll feel calmer having screened for that. But thanks for the heads up re: false positives @SarahD19, I'll certainly bear that in mind should the results not be what I'm hoping for.

@Redpanda21 I'm glad to hear you've got results you're happy with and I wish I could be as sensible as you with regards to my own!

Wishing you all the best for happy and healthy pregnancies, and once again thank you for taking the time to give your perspectives, I really appreciate it x

I made the decision to just go ahead and get the NIPT yesterday (I'm in London so could get one same day for £250).

Do you mean same-day appointment?
Where did you go? Everywhere I saw wanted me to pay for a scan as well as the blood draw.

@Whataretheodds Yes, same-day appointment, with results via email in 5 working days. I went to Concepto Clinic in Wimpole St - I had to upload my scan report when I booked online, and then it was just a blood draw which they send to lab. I paid £250 for the Advance NIPT as I wanted the enhanced screening that included a particular genetic disorder that is in my family history, but you can get the basic NIPT for the three main Trisomies for £199 I believe. I think Concepto are just based in and around London (plus Watford and Milton Keynes IIRC) so if you're elsewhere that may be why it didn't come up?

Ah, I did see that one. Thanks