NT Combined test results back.. why am I STILL worrying?

[BessieBye]

Hello ladies

Had my scan on Monday (2/11) and was thrilled to pieces. All looked great and sonographer didn’t mention anything that would make me feel concerned... until I got home and started Googling my baby’s NT measurement. I knew prior to this, anything under 3.5mm was considered normal. My baby measured at 2.6mm (CRL 59mm). Like I said, I didn’t think anything of it til I googled

A lot of women on forums are distraught with a measurement over 2mm.. so that got me thinking Jesus what has gone wrong! I haven’t really slept properly thinking about it.

I’ve just received my combined results in the post

1:695 T21
1:50,000 for T13/18

Now I’m classed as low risk, I know the cut off is 1:150. I have no breakdown of my blood work, just probability numbers. But why are the numbers so massively different? Under a 1000 for downs but 50,000 for 13/18?

Am I being silly? Please tell me if I am. But do it nicely

Thanks in advance girls.. you lot don’t half make me feel better which I feel comfortable coming on here x

I will also mention that I am 25... and I believe my chances starter out around 1:1200 (could be wrong) so I am guessing the NT measurement has increased the risk a lot

Hi please don’t read into it there is an over 99% chance your baby will be absolutely fine. I was like you worrying and kind of wished I’d not had the tests and wished you just got a high or low risk result not a number. My babies Down’s syndrome risk was 1/4001 (I am 26) which I was like brill then I spoke to 2 friends of similar ages who are also pregnant and they had risks of over 1/50000 and I didn’t feel so great but now I’ve had a few weeks to think about it I’m just grateful I’m low risk and think of the people who get a really high risk and how they’d love to get my result.

@Olive1701 that’s an excellent way to look at it, thank you.

I think because of my age I expected a much higher result (over 1000 I probably wouldn’t have battered an eyelid!). Terrible how much I worry. My partner has been telling me that’s literally 0.14% chance of having a downs baby and to stop worrying. I just can’t help it haha ☹️

Best of luck to you in your pregnancy and thank you very much for your comment x

It is still a low result but I do understand your worry. It is natural to feel that way anyway. If you want you could always go private to get NIPT but I don’t think you need to.

Sending hugs. My risk in my last pregnancy was about 1:700. I was 37 so I knew that was good but I was still disappointed as it had been much lower in the pregnancies I had in my late 20’s. It’s very hard to be pragmatic isn’t it? I wonder if the Trisomy 13 and 18 risks are lower because they are so much more rare so the background risk is much lower.

Remember you will also get some reassurance from your anomaly scan as many babies with Down syndrome will have heart defects that would be picked up then. I was a lot more relaxed after my 20 wk scan as I knew that even it my baby did have a chromosomal abnormality they would still have a good chance of being healthy.

Thank you @Meomeomeo and @Moo678 for being so understanding! I think pragmatic describes my whole life. Theories and ‘what ifs’ instead of just being rational! I annoy myself! Haha.

It’s bugging me more that i am 25. This is my first pregnancy so I have nothing to compare to, but I understand why you felt so anxious when you had different results. I asked midwife earlier as I had a planned phone appt with her anyway.. she said all 3 trisomys have different markers so not to worry about the difference in chance. She said it is still extremely low, which made me feel better too.

Any idea how i go about getting a NIPT? And the cost? Do I have to contact a private healthcare place such as Nuffield or Spire?

@BessieBye It seems to depend a bit where you are. I’m in Edinburgh and have seen NIPT advertised for £400 (including a scan). I saw another thread though (maybe from London) where someone had been quoted £1000!!! If you google private ultrasounds where you are some of those companies will do them. I think spire do them but are maybe more expensive. I’ve never had one. I’m 9wks now with baby 4 and going to wait for my NHS screening and a viable 12 wk scan before I decide whether to fork out the money or not.

This has raised an interesting worry for me though as I’m now wondering what risk I will need to get feel reassured enough not to need NIPT!

Oh @Moo678 I hope I haven’t elevated any unwanted anxiety with my post!! I’m sorry!

Massive congrats on your 4th baby. That’s wonderful news. I’m 12+6 now, was measuring 2 days ahead at my scan 😊 was lovely to see it jumping all over in there.

Thank you for the info, I’m in the North East and know a lot of these types of facilities are in the bigger cities, maybe Newcastle will have something. I will do a google!

Thought I’d share my lovely baby with a very long leg haha (because I’m just so happy to be pregnant, despite the anxiety. Made us laugh out loud!

@BessieBye Oh you haven’t caused me worry at all. I’ve been thinking about it anyway. Just realised I didn’t know what number would be ok 1:500, 1:1000, 1:2000..... I don’t think I’ll know till i see it.

You’ll definitely be able to get NIPT in Newcastle (it’s called harmony sometimes too) and you usually get another scan with it so another chance to see your bean! Good luck x

@BessieBye woah those are long legs - could be the next world high jump champion!

Ha ha @Moo678 we’ve had a few ‘that’s definitely a footballer’ comments 😆

Yes I totally know what you mean about the numbers... I say I probably wouldn’t have worried if my number was over 1:1000... but to be honest, I probably then would have thought ‘why isn’t it 1:10,000 like other 25 year olds’ haha. There is no pleasing me sometimes, I am neurotic.. always have been, always will be! 😣

Best of luck at your scan. Think we have to remind ourselves that even 1:100 chance is 99% chance baby is completely healthy!

@BessieBye you can check on google for harmony test near you. I got mine done @Fetal Medicine Centre in Harley street. The test covers t18/21/23 with accuracy of 99% for down and the others @97% or sth. It also tells you the gender of the baby if you wish to know. I’m paranoid so before we were even pregnant I told my partner that we would be doing that.

Thank you @Meomeomeo, I’m too far from London so might try find something closer. Even if it’s Edinburgh, that’s not too far from us here in NE! Closer than London. But thank you very much for the advice. I am thinking I’ll probably get one to chill me out so I can enjoy this pregnancy.

It doesn’t help that most of my scan pics were fuzzy, I do have an extra bit of tummy weight so I was expecting it and not embarrassed. The pic I posted above was the clearest one but can’t really get much from the face as I would with a closer one. Never mind!

I feel you OP
I’m 27 and my downs risk was 1/450 and that put me on edge. This was maybe for a week/10 days or so after getting the results.
I am 29 weeks now and honestly haven’t really given it a second thought. :)

@BessieBye Ultrasound Direct in Jesmond does NIPT + scan for about £400 or an NT scan for about half that. I haven't been for either of those but I went for an early scan and they were lovely, and I got some photos and a video out of it.

Those figures are really low, you have a 99.86% chance of no downs and even smaller chance of no Edwards and pataus, but if you're going to be worrying for the next 28 weeks it might be worth it to you for another test.

Fantastic @PlanBea thanks so much for that! Jesmond is very accessible from where I am 😊

The rational side of my brain is telling me of course it’s extremely low, why are you worrying! But I think it’s in comparison to the edwards/Pataus, plus with me researching this weeks ago and finding out a lot of women my age get much lower odds, it’s kinda freaked me out a bit!

I’m pro NIPT simply because of its accuracy plus you find out the gender of the lil one quite early on too. When I went for my scan the sonographer kept telling me that NIPTs are superior and if the results from NHS screening aren’t the same, take NIPT. I did tell her my Harmony result wasn’t back yet so I would need to get my blood test done.

Hey I would definitely recommend the NIPT if you're worried about your number. In my first pregnancy my result was 1:330 - I was told not to worry as this was low risk however something was concerning me at 22 years old - it didn't feel right. I had an amnio in the end - and the test came back positive for t21 and I didn't continue the pregnancy. This time I've opted for the NIPT. I believe it's 360. But I'll have peace of mind. Just waiting on results.

I would look at the reviews for the Jesmond Clinic first....they are very mixed and we did not have a good experience.

We had 3 failed NIPT tests (not uncommon and caused me a couple of months of anxiety and crying). I also had a scan there that was so rough it left me bruised and unable to turn over in bed with pain. They offered us the blood test portion of the money refunded and that took months of being ignored and fighting them.
Your NHS results are GOOD and very low risk.

@snapple21 I am feeling the same that this isn’t right at 25 year olds. My risk based on age alone has almost doubled since my screening. I want to know why.
I spoke to a senior midwife and she basically shrugged it off as it’s low risk get over it. But I do have an odd feeling.

Thinking about it I have no idea where il get the money from in the mean time for a NIPT. I’m actually beside myself I am not sure what else to do 😣

@SkylinesTurnstiles sorry your comment must have got lost amongst the others and I’ve just noticed now!

That had really reassured me, thank you. Congratulations and wishing you the best of luck with your pregnancy. I am hoping in a few days I feel a bit more relaxed 😌

Hello everyone.. been thinking logically (and using this online tool to see if nuchal measurement increases or decreases a risk)

Looks like my NT measurement of 2.6mm is highly likely the reason my risk has increased.

Online calculators say based on my dates, CRL, age & NT it would be about 1:329. If it is a reliable calculation, then my bloods must have been ok because my result is higher than that.

I know it might be a load of rubbish or not very reliable, but it HAS helped me calm down a lot and think rationally. 2.6mm is within normal range, but the risk is increased the closer to 3!

I’ve booked a private scan for 16wks (3 weeks time) so I can have some reassurance on wellbeing.. not sure I could wait 8 weeks til my 20wk scan!

For anyone (now or in the future) reading this with the same anxieties, this is the link I used

www.hutchon.net/GrowthdownUKhook.htm#age