Get NIPT now, or wait until NT/12 week scan

[Copenhagener]

I’d love some input on what others have/would do in my shoes. I’m really stressed out.

32, first pregnancy, IVF, unexplained infertility. Currently 9+4. 86kg. Scared of trisomy 13/18 risk.

I received my blood test results (combined test) for Papp-A / Free hcg on Monday. I won’t have the hospital’s MoM value until 27 May (just the IU/L value) when hospital will do my NT scan. They won’t comment on the values until then. I put them in a calculator, and it roughly spat out:

Papp-A: 0.236 IU/L (0.55 MoM).
Free hcg: 23.8 IU/L (0.33 MoM).

No idea if the MoM values are correct, but a diagram put me in the lowest range for normal, bordering into 13/18 territory.

Had a 9+3 (private) scan to check pregnancy hadn’t miscarried yesterday.

The ultrasound technician at the private scan said heartbeat was on the high side (182-185) which can be a sign of trisomy 13 in particular, and that I was measuring 9+1 according to her measurements - my first scan placed me at 9+3. However, I did have an abdominal rather than TV scan for the first time.

I’m a bit concerned. It seems more and more likely my results will come back high risk. I’m not coping with the uncertainty well. I’d terminate if I have one of these conditions.

So: my dilemma. I am able to get a NIPT test from Thursday next week if I want privately.

However, it’ll cost around £500, and I’ll get the results approx. around the same day I have my neck fold scan at the hospital. And then, if there are abnormalities, they would anyway give me a NIPT (hospital paid-for) that day anyway. But if I do that, I’ll need to wait another 5-7 days for results - and I’ll be on holiday abroad that week. If I do NIPT next week privately, I’ll have the results beforehand and could act more quickly.

In my shoes, would you get the early private NIPT next week, or wait for the hospital neck fold/12 week ultrasound/risk assessment?

I know NIPT is more accurate than the combined test, and I’m SO incredibly anxious at this point and even feel detached from the pregnancy, which is devastating after going through IVF to get here.

Hey OP. From personal experience of waiting on results for the NHS NIPT, I’d go private. Mine took 7 days not including weekend to come back and I was going out of my mind. The wait was unbearable. Please try and stay positive though, I know your numbers are what they are but there’s always hope in these instances, especially as you haven’t had the NT yet. Good luck! X

@Copenhagener can I ask where is able to do an NIPT with same day results?

@Copenhagener sorry I miss read. I thought you meant you could get NIPT results same day, but you just mean NT scan results.

@crimpdad yes, just the NT scan results. Same-day NIPT would be the dream!

@AimeeLou84 thank you for your thoughts, I’m in Denmark, and I know they have to send them to Germany for processing, so I’m also concerned about how long it’ll take, especially as there are some public holidays coming up.

I know it’s not ‘conclusive’ yet, but those numbers have completely put me on edge. We’re asked to do the double test at 8 weeks, which means then a 3-4 week test until the neck fold scan - all while knowing the results with no explanation. It’s been so crap! I wish I’d have ignored the summons to give blood so early. Can I ask how your NIPT went?

@Copenhagener Hey. So originally I was down to have the ‘Quad Blood Test’ here due to my age (39). There’s a higher risk for the 3 syndromes the older you get. I had the Quads and they come back high risk 1 in 137 chance. This was a mixture of my age and my PAPP A & HCG levels. The cut off is 150 here. I then had the NIPT which come back low risk, but at my hospital they don’t tell you the chances once it’s low risk. So know numbers were given to me. Now I know people are going to say, your numbers were good, but there’s always the risk and that’s what was constantly in my head. That said, I’ve seen a lot of people on here say they had 1/2 chance and all was ok. I was continually reading positive stories on here to get me through. Searching NIPT across the site to get me through. I sincerely hope all is positive outcome for you and please keep us posted x

We had a private NIPT at 10+5 with this pregnancy. It was £400 but worth it to go into the 12 week scan feeling more confident after multiple miscarriages.

Thank you everyone for your thoughts. I’ve booked in a NIFTY test for Wednesday. They’ll also do a very detailed scan for any early soft markers or 13/18. I’ll have the results latest one week later.

It’ll be a nail-biting week, but it’ll help me proceed, either way.

From my experience I think finding out the earlier the better. I’d of paid a lot of money to cut our waiting time shorter. We had the worst outcome and needed to terminate - I wished so much we just knew results earlier so the termination could have been earlier.

Hi everyone - back with a short but sweet update: NIFTY test came back as low risk for everything. I’m so, so relieved. Thank you for encouraging me to get it!

So happy for you!!! Now try and enjoy your pregnancy xx

Great news! :D

Hi Copenhagener, can I please ask you which NIFTY test you went for? I am torn between the NIFTY Pro and NIFTY Pro Light for fear of opening the door to false positives. Would be helpful to hear your experience with this test.

Hi,

Oh gosh, this was a while ago now!

I just double checked and I had the NIFTY Pro. Looking back, I was definitely overly anxious and didn’t really need the test - my double test results came back as extremely low risk (like 1:50,000 / 1:20,000) a few days after the NIFTY test was done.

The MoMs I worked out on the online calculator were SO wrong - it ended up being 0.9 for the MoM for the Papp-A and the neck fold was 1.2mm. Completely normal.

But at the time, it did ease my concerns. I ended up having another complication (too much amniotic fluid and needed weekly ultrasounds by the end) which reminded me you can’t control everything. Baby ended up being totally healthy and actually large for her gestational age.

If you do have a specific worry though, I think it’s worth doing - but I’d wait until after the double test.

Thank you so much Copenhagener for your very detailed and helpful reply. I have had a bit a rocky journey thus far with our second (series of miscarriages in 2023; difficulty getting pregnant in 2024) and currently I hit 40 so we would like to have peace of mind with this one. With our first we had the Serenity test, which was amazing, but unfortunately it’s been discontinued. I was recommended the NIFTY, but was scared about whether the NIFTY Pro goes into too many issues that could open the door to false positives. But you and others told me that they went for the Pro and it seems that it is generally performing well on the market. Fingers crossed all goes well for us 🙏 Thank you so much for responding and hope your little one is doing great!