NIPT/SAFE test opinions

[Cafeaulait27]

Hey everyone, my husband and I are thinking about getting a SAFE test (NIPT) at the hospital as they offer it privately for £350.

We got a low chance combined screening, but we both feel that we’d like to be a little bit more sure.

I’ve heard mixed statistics on NIPTs accuracy, but when I went on the SAFE test website, it said it had a PPV of 99% for all 3 trisomies and about the same for NPV which we thought was really good. We were also thinking it would be an added bonus to possibly find out the sex too.

Would be great to hear opinions from those who have had an NIPT, did it reassure you? Did you find waiting for results really anxiety inducing?

I've had previous miscarriages, several from chromosome issues, so had NIPT twice now which I've found very reassuring. We used the Panorama test which can be done from week 9. The wait for results was only a week and whilst it feels like a long wait, I'd much rather than than wait until week 20 to find that there's something wrong.

Thank you @kensue19 thank you for sharing, yeah we had 2 losses last year and this is the furthest we’ve got with a pregnancy, so we feel quite paranoid tbh and feel like NIPT might reassure us.

Thank you so much for sharing and I’m sorry for your losses. I think we feel the same - we don’t want to wait until week 20 to find out for the sake of £350 and some peace of mind.

The NIPT test sounds great and is really accurate. But please be aware, it can't assess for the physical anomalies that are diagnosed at the 20 week scan, it looks at your risk for the 3 syndromes.

@overwork thank you. Yeah we’ll probably have the NIPT and then worry about the next thing - the 20 week scan 🙈🙈🙈 so hard to relax and enjoy it! X

Would recommend!
I am of the ‘higher risk’ age (36) with this pregnancy so I didn’t even bother with the NHS screening as I knew the anxiety of a 2 week wait would result in a high risk result. We decided to go and have a NIPT and got the results back within 6 working days.
It cost £530, that included a good through scan, pics and even a usb with images and heartbeat. Regardless of all that, the relief of the result being more accurate definitely was worth the money as I was anxious.

However if I had a low risk result already I am not sure if I would bother. All depends if your adding more anxiety for yourself having to wait for these results or if it will make you feel better and allow you to relax and enjoy your pregnancy more x

Thank you @HayB great that it came back low risk for you and you found it reassuring.

Yeah I am still a bit on the fence, but I think we want some further reassurance.

Although the NT measurement was 2mm which is fine, it was done at exactly 12 weeks and apparently it should be more like 1.3-1.5 at this gestation so it came up as 89th centile. Most people told me I was reading into things too much but I still have it bugging me in the back of my mind that it was a little high for 12 weeks xx

Hi,

I’m 38 so was aware that due to my age the nhs combined screening would be high risk.

So we’d already decided to skip the nhs screening, and pay privately for a SAFE nipt scan and test.

We went to the birth company on Harley street in London. We paid £500 and was the best money spent so far.

The scan was insanely thorough. More than any nhs scan I’ve ever had.

We got the results of the test 7 calendar days later all the lowest risk possible at 1:100,000 for all 3 trisomies.

X

Just to add we had the SAFE nipt test and scan done at 13+4 and the nt measurement was 2.1mm

Hey guys, just been and had my NIPT/SAFE at the hospital, apparently results take 5 days. Fingers crossed we find out this week but I guess more likely it’ll be next week.

Bit nervous now but hopefully it’ll be fine and we’ll have the extra reassurance! Xx

Just updating here in case anyone looks in future - Just got the call and we were told the results are low chance 1 in 100,000 for all 3 trisomies!

100,000 is the lowest chance for the SAFE test so we’re super happy. They don’t tell us the sex but hopefully we’ll find out at our private 16 week scan xx

That’s amazing @Cafeaulait27 I’m so pleased for you. That’s the same result we got from the SAFE test. Felt very reassuring.

Did you opt to not find out the gender from your test? We were given the option and found out. Had it confirmed at a 17 week scan last weekend too! X

Hi @Moominmiss thank you! I feel so reassured. The doctor was so lovely on the phone, she called my husband instead of me which was strange so he just passed the phone over to me, she must’ve called him by mistake! But it was nice to both be listening to find out.

As ours was through the NHS (even though we paid privately for it) they don’t allow you to find out the gender for ethical reasons apparently. It would’ve been a nice bonus but now hopefully we will find out at our 16 week scan and that’ll be nice to look forward to!

What are you having? So exciting Xxx

Ah yes of course, I forgot you had yours done via the nhs. That’s so nice that you got to find out together. I was an absolute nervous wreck taking the call, I could barely speak. Then as my partner was at work I just phoned him straight away.

Will be lovely for you to hopefully find out at the 16 week scan. We’re having a boy and he made it very obvious during the scan too 😂

How long now until your scan? Xx

Yeah it was really nice but kind of surreal! He just passed the phone to me and I didn’t really know what it was about so it was all a bit confusing at first haha, but really lovely too!

Ahh that’s amazing that you know you’re having a boy! Our scan is on 1st May so two weeks away, really excited! 😊😊😊 are you just waiting for your 20 week one now?

Have you felt any movements yet? Xx

Oh your scan will come around so quickly now! So exciting.

Yeah just waiting on the 20 week one now which is on 30th.

I’ve been feeling pops and flutters for a good few weeks now, they’re few and far between due to an anterior placenta but no mistaking them. How about you? Xx

@Moominmiss that’s so exciting!

I haven’t had anything yet (I don’t think) and have an anterior placenta too so trying to be patient with it! Must be amazing to feel them Xxx

I had my only child in Australia. So I don't really get it. NIPT was standard for everybody over there. Do people generally not have the NIPT in the UK?

I had it done earlier this week after i was told the combined test on nhs wouldnt be carried out as baby wasnt in the right position.

From what ive read the nipt is more accurate. Ill get resulta next week including gender. Its defintely reassured me.

@StopCryingYourHeartOut that’s great! In the uk it’s the combined test as standard, and then if you get a high risk result some hospitals will offer NIPT for free. My hospital does that, but we got a low chance combined result so we paid for NIPT 😊

It would be great if the NIPT was standard here, I imagine it isn’t due to the cost xxx

@Summersun12 good luck for next week, it’s definitely reassured me. Great that you get to find out the sex too xx

What is the combined test?
Is the NIPT not a combined test?

@StopCryingYourHeartOut the combined test is where they scan you and measure the babies nuchal translucency, then they take your blood and measure pappa and hcg. They put that all together and work out your risk, and it’s about 85% accurate. So NIPT seemed like a good option for extra reassurance 😊