NIPT - would you pay?

[Luckyme30]

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!

I have with both (waiting on results for this pregnancy) but I was 39 when got pregnant with DC1 and am now pushing 42. I’m also a massive worrier so knew if id had the NHS bloods abd they came back worrying I’d go fir NIPT prior to having an amnio but would then have a couple of weeks of worry so for me it made sense to cut out the middle man. But it is a lot of cash.

I paid for it as it was an unexpected pregnancy and it helped me get get my head around it. I felt personally while it's a lot of money it's worth it. @glasha87 I am in Ireland as well and my own personal experience couldn't be more different to yours, my gp did the test for me and actually when I was having a scan a few months later I met two women in the maternity hospital who were there to have it done.

I’m a worrier so I think it’s going to end up us paying to have it done.

I guess the bonus is that we will get to find out the sex and also that we do get a scan with the test included in the price and as baby was asleep when she did the dating scan I didn’t get to see too much - maybe this time baby will be a bit more active :)

Now I just need to try and persuade my other half :p

I think it depends on whether you would terminate if there was an issue or not. You can have the NIPT privately from 10 weeks, then potentially the CVS shortly after, then if you wanted to terminate you could do before you were too far along.

I had the NIPT at 10 weeks recently and would recommend it. The reason I had it was a friend of mine had a baby with an trisomy disorder which wasn’t diagnosed u til after birth. The baby was very unwell and died after a few months. They had been given a low risk result from the NHS screening and the experience has been absolutely devastating. This is uncommon but it made me not want to take any chances. It’s important to remember the NIPT is still a screening tool and not diagnostic.

Yes I would go for it. With hindsight I wish I'd had nipt earlier, rather than waited till 12 weeks (actually 13 when the pregnancy was dated) which would have saved so much upset when I had a high risk nhs screening.

Sorry to hear about your friend that’s such a shame, this is exactly what I worry will happen.

I have also read some negative things about the test so it’s weighing it all up, for me personally though just having a blood test (think it’s the quadruple) which only screens for downs just doesn’t seem to be enough reassurance - I know some things don’t get detected until after birth but it’s nice to be able to prevent that as much as you possibly can.

I just wish there wasn’t such a high price tag attached to the testing, though there are some positives in that the clinic I have contacted have told me that my other half can come so he will get to see the scan with me which is nice for him too :)

Waves @MotherofKitties , how are you doing? How far along are you now? I remember you too, so happy to see your username and that your pregnancy has progressed 🌈💜

I think @Luckyme30 you can shave off expenses elsewhere when you have a big payment like this to make, we all do it with other things and this is a really important test especially in your circumstances as well as the nhs's circumstances currently. For me personally I'd be booking it before they got fully booked for this next few weeks otherwise you really are pushing it will dates and how late your going to find out. It's usually a thirty pound deposit so it can be cancelled, I mean you could just pay on finance, it would work out at about fifty pounds month until the baby was due. I mean is that really that much to know the results of an anomaly scan and bloods within a week?. We are doing it on my partners credit card, and paying it off in a similar way. But different strokes for different folks. Some people wouldn't dream of doing that but we will get like everything second hand that we don't have and I have most of the other stuff like clothes from my last baby so really only need a double pram and another snuzpod/next to me (as it's twins!).

It does depend on your lifestyle too and what matters to you personally.

For us we would rather go without for ourselves for a few months or second hand bits for the babies, and have their health screened as best we can. That is the priority and the NHS just can't cope currently or give you the answers you need.

@ChampooPapi I think that's a great way to look at it. Many people spend lots of money on dinners/drinks out, which can easily turn into £440. Less takeaways, more homecooking and things like that.

@Luckyme30 one thing to be aware of though is that the harmony test although it states is 99% accurate, only works this accurately for T21, Down Syndrome. In rare cases people get a high chance of T13 or T18 which then needs a cvs or Amnio and it happens that this isn't the case. So for these two Trisomies, keep in mind that if you get a high chance that it's still possible that this is not the case.
For DS (in my experience and I'm going worst case because this is what it was for us) the result came back with a likelihood of over 99%. This however isn't a diagnostic test so lots hospitals will need a diagnostic test (cvs or Amnio) to be able to offer a termination for medical reasons.
I'm sorry if this all looks scary, you obviously have no reason to be concerned about any of this. But if you are worried about the much rarer T13 and T18 then I would also push for the bloods at the 16 weeks scan.

And that advice from you @NoCallerID was the best advise I think @Luckyme30 is going to get. Absolutely bang on. That last paragraph is what mumsnet is about, clear and fact based advise from a mother who has been through the process 🙏

OP- have you been offered a 2nd scanning to check the NT? Seems odd that they only try once, and if not visible, that's it! I'd ask again.

I had NIPT and SO glad we did. 1st pregnancy age 38. I had it at 10 weeks- the earliest it can be done, and results showed patau syndrome (trisomy 13). The private clinic booked me for a detailed scan which showed NT 6.5mm, cleft face (not just cleft lip!) and several other abnormalities that were even obvious to me on the screen! I was give the option of CVS or amnio, but due to the obvious issues, we chose TFMR.

Its a personal thing, and something you need to discuss with OH before having the NIPT. It was still a shock to have that diagnosis, but I had to keep thinking of the positives- as odd as that sounds. Being able to chose the TFRM, was one of the few things that I could control. I knew I was having it done very early on, and I wouldn't suddenly MC whilst at work, or go to term and have a still born, or bring the slim chance of giving birth to a baby that was alive, but going to die in pain within hours. Having the choice so early, meant we could mourn, and get back to TTC as soon as ready.

I then had a MC, and currently 7 weeks with 3rd pregnancy. We plan to have the NIPT again, and currently looking at another version called panorama. It can apparently be done from 9 weeks. In addition to the tests that NIPT cover it also includes angelman syndrome, prader-willi and other depletion conditions. I only heard of it yesterday, so I'm still researching whether its worth it, as about £100 extra.

1 thing to consider, is that some clinics still send the blood samples to labs in USA. The turn around time for this is obviously longer, and there is a small risk of them going missing or taking even longer with the current crisis. More and more labs are processing them now in the UK, so those are the only ones we are considering. Look around, because many private clinics will include additional scans, which you may/may not get benefit from. best of luck x

Thank you @ChampooPapi @NoCallerID and @Elouera and everyone else for your really helpful comments!

Reading the last few comments I think you’ve put my mind at ease about having the NIPT.

The NHS definitely won’t scan me against having the nuchal measurements just isn’t an option for me :( Someone mentioned to Make sure I get the bloods at 16 week scan, I don’t have a scan at 16 weeks but the midwife is taking bloods (quadruple) is this what was meant?

@Luckyme30 you're welcome. Yes, I said if she offers bloods, take it. It checks your hormone levels and can detect things like placenta issues if you were to have a very low Papp-a. I personally didn't receive hormone levels with my harmony test.
The quadruple only checks for T21, not T13 and T18 as they can't take reliable measurements of the NT anymore.

@ChampooPapi thanks, that's nice to hear.

Thanks @NoCallerID. I know I’m having bloods at my midwife appointment (think I’ll be 15 weeks) and was concerned that I had no bloods taken at my 12 week scan so guessing the quadruple will be the one that tests for hormones?

Yes, that's right.