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Pregnancy

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Original poster

NIPT - would you pay?

39 replies

Luckyme30 · 20/04/2020 16:17

Bearing in mind they couldn’t get nuchal measurements at my 12 week scan (on Friday) I’m considering the NIPT which also includes another scan.

It’s £440 where I am, they are allowing partners (private scan) would you pay?

I’m 32 and it’s my first pregnancy just wondering if it’s really a necessity but know I may worry if I don’t have it done!

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RoLaren · 20/04/2020 16:28

I did, because I was deemed high risk (aged 43, plus measurements) 1 in 80. We had the Harmony test privately and had a reassuring low risk result and the added bonus of finding out the sex. I guess it depends on your particular circumstances. Would you end a pregnancy based on a probability or does it not matter either way? Do you want to know to be prepared? Did the NHS say they would rescan for the nuchal fold measurement?

Mc3209 · 20/04/2020 16:31

I did (waiting for the results now). I am 31, my first pregnancy. I just wanted an extra bit for reassurance. Didn't have my 12 week scan yet (booked for Friday when I will be 12+6).

WannabeMathematician · 20/04/2020 16:51

I didn't. It was £650 in my local area and that's more than the cost of the most expensive pram I'm looking at.

My husband and I are also quite stats litterate and got very angry with how they were presenting the numbers in the leaflet we were given so partially boycotted on those grounds.

On top of that, I was happy with the tests the nhs gave so felt no need. And we're not high risk for anything.

I do understand why people get it though. There is so little feed back in those first few months and nothing happens visibly so to have anything tell you it's going well is a relief.

Dyra · 20/04/2020 16:54

I had the exact same circumstances as you last year. 32, first baby, couldn't get nuchal measurements. I chose not to get the NIPT.

Partly because £440 is a lot of money for DH and myself. We could afford it, but we felt it would be money better saved to be spent on baby stuff. The biggest reason however was that while the sonographer couldn't get the measurements, she wasn't concerned by what she saw and told us so. That gave us a fair amount of reassurance.

Eventually I had the quad test at 16 weeks which came back low risk for Down's. Admittedly it was nerve racking going to the 20 week scan knowing the risk of Edward's and Patau's hadn't been eliminated, but all was well in the end.

glasha87 · 20/04/2020 17:10

Hey there,

I’m 32. In Ireland they don’t offer the NT test or any type of screening. The only options are the NIPTs via a private clinic or wait until the ANA US to see if there are any soft markers.

You would be surprised by the amount of people who haven’t even heard of the Harmony test here!
My DP’s sister recently had a baby at 36 and asked what was that when we asked if she had it done.
I was always adamant I would get an NIPT for added peace of mind, but as time went on, I decided against it. There a worse things and people seem to become fixated on Down Syndrome, the only one of the trisomies it can point to with any sort of accuracy.

A registrar at the hospital I attend also advised against it because she felt it was unnecessary and because it is a Pandora’s box, being non diagnostic.

I guess it comes down to what you would do with a high risk result, have a diagnostic test or forgo.

Original poster

Luckyme30 · 20/04/2020 18:17

Thanks for all your useful responses.

As far as I’m aware I’m not high risk, I am 32 and the Sonographer on Friday said as she couldn’t do the Nuchal measurements that she felt I wasn’t high risk so for me there was no reason to be concerned.

I will be having the combined testing (with midwife at 16 weeks) but obviously that doesn’t cover any of the other conditions that the nuchal would have done.

My rational side is thinking £440 is a lot of money and as has been said above that’s the price (we would be looking to pay) for a travel system. I also only get 6 months mat pay - with some of that being at half pay, I intended to be on mat leave for 12 months so when I weigh it up I think that £440 would be a lot of money to help towards that time.

My only concern is that there could be something that potentially would have been picked up had they done the nuchal measurements and then to find out at 20 weeks would be much more difficult to deal with mentally then if I knew in the next week or so.

That’s what is playing on my mind, my other half feels that it is a bit of a waste of money but is happy to go with it if it puts my mind at rest but then as someone above mentioned it is only most accurate for downs rather than the others so would it just be a waste of money!

I wish I could have just had the nuchal measurements to put my mind a little bit at ease :(

OP posts:

ChampooPapi · 20/04/2020 19:42

Im having it definitely. I've got two children already and I'm pregnant with twins so I really need to know all the information I possibly can as early as possible, as that will inform my decisions that proceed those results. I definitely don't want to get to 17/18/19 weeks to get a not so good result that then needs amio, and then maybe a termination.... Doing that at nearly twenty weeks is not something I want to consider.

It all depends on your views though, if you would carry on with the pregnancy it really doesn't matter knowing a little later about any issues.

It's a very personal choice, and even the Harmony/nipt/Iona tests are completely fallproof and are not diagnostic but they can lead to a diagnostic test if you were to get a result you are not happy with taking the risk with.

Equally I didn't have the nipt test with either my other daughters but they got really low results at the NHS scan and from bloods taken then.

It is a hard choice that's for sure

ChampooPapi · 20/04/2020 19:43

@Luckyme30 😊

ChampooPapi · 20/04/2020 19:44

*Arn't completely fallproof

NoCallerID · 20/04/2020 19:49

I had the harmony done with with my first and didn't want it with the second. Before we fell pregnant someone we know had a baby diagnosed with DS after birth due to the NHS combined coming back low risk so they didn't bother. We told ourselves we would always do the harmony test. So we did with baby 2 and we received the high risk results from the harmony test on the same day as the 1/40 results from the NHS. There were other issues too and we terminated but with our next pregnancy we will do the same.

Littlegoth · 21/04/2020 12:21

I had mine done privately through my local hospital for £275. Worth asking x

ChampooPapi · 21/04/2020 13:35

Yes definitely worth asking @Luckyme30 about what @Littlegoth did. Because some hospitals will offer that test instead of their blood test of you pay. It's cheaper because you don't receive an extra scan as well I think as it's just the bloods. It's what I was initially trying to do through Torbay or mount Stuart hospital in Devon as it's so much cheaper that way and the money is reabsorbed into NHS.

Sadly my local hospitals don't do it but the scan is the same as the 12 week one so of they do go for it

kittykat7210 · 21/04/2020 15:07

We paid for it, but only after we had our 12 week results back. If we could have had amniocentesis we would have but the cut off for that is 1:150 and we had a 1:180 result (after a nuchal fold measurement of 1.5mm)

It was £400, an amount we didn’t particularly want to pay but as the definitive test wasn’t an option we did it because we would have made the decision to terminate if it was a yes. Where I am you can use the NIPT result to get amniocentesis done on the NHS, luckily our result came back as 1:10,000 which is the lowest risk they give for the NIPT. We still don’t know for sure until baby is born, but we were happier with the 1:10,000 result than the 1:180 result!

Original poster

Luckyme30 · 21/04/2020 15:12

It’s so difficult as I haven’t been able to have the nuchal measurements and also no blood taken at 12 week scan...

Does anyone know if even if they can’t get nuchal measurements they should have still taken my blood?

I feel like we’ve been pushed into having to pay for the NIPT because we don’t even have any figures or possibilities from my nhs scan.

To me it’s just a matter of not even knowing what my risks would be because I’ve got nothing to go by!

OP posts:

MotherofKitties · 21/04/2020 15:30

I paid £400 for a NIPT test. Second baby, had a miscarriage before this pregnancy and I wanted the extra reassurance, which I got, along with confirmation I'm having a little girl!

It's not 100% accurate, as in it's not a diagnostic test, but if you get a low risk result, NIPT 'false negative' margins are extremely low. If you got a 'high risk' result, the NIPT results are less accurate, but this is something you can research at your local private clinic or ask your MW about. Good luck either way x

MotherofKitties · 21/04/2020 15:45

And congratulations on your twins @Champoopapi I remember you from the conception boards; number three has turned into No.3 and 4! Fab news

greytminds · 21/04/2020 15:49

I did but I’d had three miscarriages previously, was extremely anxious and I couldn’t have coped with the likely feedback from the NHS that I had a higher risk due to being older (37). I could also afford it without worrying so it was a no-brainer. I couldn’t cope with having the uncertainty of no measurements at this stage.
They can also tell you definitively if it’s a boy or girl (or at least the harmony test I had did include this).

StarsOnAMat · 21/04/2020 15:52

I wasn’t able to get the measurements with either baby at my scans. The first time, I had the bloods done at 16 weeks and the result wasn’t back until 19 weeks. Second time, I had the Harmony test only a couple of days after the scan and the results were back at 13 weeks. Also found out the sex but you don’t have to do that. You can tick to not know.

Original poster

Luckyme30 · 21/04/2020 16:11

So difficult, we do have the money but I don’t get full mat pay so just thinking that £400 is a lot to go towards me being able to stay at home for longer...

Just wish that if the NHS can’t get the nuchal measurements we are at least offered the NIPT at cost price rather than having to go privately to get jist a little bit of reassurance :(

OP posts:

NoCallerID · 21/04/2020 16:23

@Luckyme30 wait until you have your blood results from the combined test with the midwife at 16 weeks back?
I wonder how they can do the combined excluding the NT... Did they not offer you the blood test at the 12 weeks scan?
For our baby the NT was absolutely fine, no other soft markers (well, Omphalocele but this not often linked to T21), yet he still had Down syndrome. The main indicator was the high HCG and the very low Papp-a.

NoCallerID · 21/04/2020 16:28

(I'm 33 so not at a high risk due to my age either...) if you feel the £440 are worth spending so you stop worrying then do it.

Megan2018 · 21/04/2020 16:29

If you would consider termination then yes. I had NIPT and would definitely have it again.

I wouldn’t want to wait until NHS results due to the trauma of a later termination, if there is an issue I’d want to be able to make an early decision.

If you’d continue pregnancy then I’d wait.

Minkies13 · 21/04/2020 16:32

I had it with my last pregnancy and I also had it last week with this one. Far more accurate than what's offered through the NHS. Plus, it has the added bonus of also finding out the sex of the baby.

Dyra · 21/04/2020 16:33

No. If they couldn't get the nuchal measurements at the scan they wouldn't take your blood.

The blood draw will instead be at your 16 week midwife appointment for the Quadruple test. If it's a telephone appointment, you need call to get it changed to face to face, or get a separate appointment to get your bloods done. My results were back within the week.

It is hard not knowing I know.

wondering7777 · 21/04/2020 16:37

110% yes. I’m an anxious person and it was worth every penny to put my mind at rest!

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