Would you pay for an NIPT for these odds?

[CandleRigg89]

I’m 35 and just got the result of my triple screen back from the 12 week scan - Edward’s and Patau’s was very low but Down’s Syndrome was 1:678. Whilst still low risk, my son’s 3 years ago was around 1:3500 so I was shocked at how low it is.

Scan went well but NT was 2.7mm - still normal but high end. She did struggle to get the reading and said she went with the highest she got, but it all looked great to her.

Husband and I are in agreement that we would terminate a DS pregnancy, but our risk tolerances seem to be different. I feel that whilst those odds are 99.85% that everything will be ok are still ok, I’d rather the NIPT for peace of mind. My husband feels that 1:250-500 he’d do it, but thinks the risk is low enough as it is now and he’s comfortable there.

Just wondering what other’s take would be?

My odds got significantly worse when I was pregnant second time round.

First pregnancy was 1:30,000
Second was 1:5000

And I told my midwife I was worried and she said 'I'm not being funny but you're three years older, the odds will be worse'.

However your odds are very close to the limit. I thought NIPT was the test you've already had so I'm not sure I can advise further but just wanted to reassure you that It isn't surprising your odds are worse this time round x

Thank you!

The cut off limit my hospital use is 1:2-1:150 so it is quite high above their limit, and I know at 35 my risk is naturally hit the tipping point, but feel it’s just too close for comfort!

the triple screen looks at NT thickness, maternal age, And PAPP-A and HCG numbers (all normal) and gets a combined risk. It’s about 90% accurate for over 35’s. NIPT analyses blood and is 99.9% accurate, so if NIPT says low risk the chances of having the condition are as close to zero you can get without diagnostic testing.

The NHS only offer NIPT screening if you initially screen high risk but you can pay privately. It’s £400 quite though - quite steep when one of us doesn’t think it’s necessary but I would like the peace of mind I think!

Whilst £400 is a lot of money, it really is a small price to pay if you would terminate a DS pregnancy.

£400 vs raising a child forever with a condition you feel strongly enough to terminate over.

Unless £400 is going to put you in debt or leave you hungry, I would do the NIPT with no hesitation. Make the saving somewhere less important - second hand buggy/cot/bouncer/highchair.

Sleepyquest- if you had a baby in the last year or so, your odds going to 1:5000 might be because a lot of the labs changed that to their upper reporting cutoff. Your chance will go up due to age but reporting cutoffs also make a difference :)

This is my exact thinking. My husband feels 0.15% is a small enough risk. I think he’s right that is is small, but the reality is once they're here, they’re here and that’s it. Risks make no difference if you’re the 1 in 678!

Hey these were my results in 2021 🙂 no more babies for me so I shan't worry about what the new reports mean but thank you!

I would do the NIPT in your case,for peace of mind. Due to my age I did it immediately.

I had an NIPT in a pregnancy last year as the odds were just under 1 in 400 at 38. I'm pregnant now at 39 and my odds were 1 in 1,800 so I won't bother this time around. In your case I likely would, even though you should be fine. when i was pregnant with my DS at 35 the odds were 1 in 5000.

We’re getting the NIPT done even before the NHS screening as like you there are things we wouldn’t continue for and I’d rather no earlier than wait and it become harder.
In your case I would get the NIPT and if it’s all fine then I would thank you universe that I paid £400 for it to work out and consider that a bargain.

I paid £350 for NIPT, I actually went into my nuchal screening with the result, which was quite nice.
I actually don't know what I would have done had it been positive, but I know someone who screened low and was told a few hours post delivery that her baby had T21. I couldn't have that be me.
My nuchal was fine and came out as low risk. I have no regrets about paying for my NIPT.

You didn’t ask this, but genuinely wondering why you would terminate a pregnancy if baby had Down syndrome?

You do know you could have a surprise diagnosis at birth. Or a diagnosis at birth of another condition which goes undetected by these tests?

I think it's completely up to you. My first pregnancy at 33yo was 1 in 50,000, this pregnancy at 36yo was 1 in 3,000. Still very low risk and if I had got the 1 in 3,000 for my first pregnancy I wouldn't have thought twice about it. But the huge change in numbers worried me and had me going back and forth as to whether I wanted a NIPT for peace of mind, which we did do.

It was honestly the best thing I did and I couldn't recommend it more. I now have complete peace of mind (plus, it was lovely to see the baby in such detail, they took us through everything). We tested for all three trisomies so paid £350 but if you were just worried about DS, the provider we used had an option for just that at £250.

You wouldn’t have a surprise diagnosis if you had the NIPT (or vvvv unlikely). As for other diagnoses, you can’t test for them but that doesn’t mean you can’t test for the things you can? Most people don’t want to have a child that needs lifelong care, it doesn’t make you a lesser person or anyone else’s child devalued.

Anyway, my odds also went up in second pregnancy. My first was 1 in 8,000 my second was 1 in 3,000.

I’d terminate because Down’s Syndrome, even when on the mild end of the spectrum, is a lifelong disability that comes with many limitations.

Theres’s a lot we can’t test for, but we live in a country where prenatal screening can test for and diagnose some and are fortunate enough that women have the choice to decide if they want to knowingly add a disabled child to their life or not. I have another child to think of too.

I think there’s so much we can’t control, I’m very much a fan of controlling what we can.

Thank you so much for your replies everyone. Definitely going to book the NIPT!

If you know you wouldn’t continue the pregnancy, I’d get the test so you know either way.

You have the same thought process as me. Of course there can be any disability or birth injury, but stopping something we can screen for is just common sense for me. Like PGT-A screening in IVF

I paid for the NIPT test before any NHS screening because I was 40 and knew age would skew the NHS results anyway. I also knew I wouldn't continue the pregnancy if there was something 'wrong' so wanted to be able to make the decision quicker, especially seeing as they weren't even getting around to first scans until around 13 weeks. It was worth the peace of mind (we also found out the sex of the baby at 10 weeks which was a bit weird!)

Thanks so much everyone! Managed to hey an appointment for this morning so should know either way in 7 days! An anxious mess but glad we’re doing it!

Those odds aren’t significantly worse - NHS doesn’t offer and risk lower than 1:5000 any more. So even if you are 1:10,000 they will only say 1:5000.

And yes, OP, I would absolutely book the NIPT for peace of mind. You also get to find out the sex! 😁

definitely! Have an appointment for the blood draw in an hour! Although I really don’t want to know the sex 😭😂 trying to figure out if I can somehow get the results without seeing the sex!

I think if you forget the actual odds and consider just how much this will dwell on your mind instead. If you think you can relax enough with the odds you were given (which are definitely still low risk) then I'd save the £400, but if you think this will be a continued source of anxiety for you, I'd pay the money. You still have 28 weeks of pregnancy left, that's a long time to be worrying.

My first had an NT of 2.7mm and odds of 1:3500. All turned out fine. My second was 1:110 (I was 5 years older which impacts the odds). I did have the NIPT second time around. It did make me feel much better when I had the low risk results from the NIPT, but I did have an actual high risk result.

People seem to think that the only downside of NIPT is the cost and they view it as a small price to pay for peace of mind, but with every screening test there is anxiety and the chance of a false positive that should be considered too when going for multiple different screening tests. It happened to me with NIPT, for DS, and at an older age than yours (the chance of it being a true positive were much higher), so you can imagine the level of distress it caused (no test managed to really reassure me afterwards so I just didn't enjoy my pregnancy).