Private NIPT-really worth it?

[newtolineofduty]

Hey everyone! Currently trying to decide whether to have NIPT for Down's syndrome, Edwards and Patau syndrome done privately and just wondering whether it's worth it given it still only gives the estimated risk. I've read that it can replace the need to undergo potentially risky and invasive procedures such amnio but I don't understand how if it still only gives a 1/X chance which is just the same as the nhs? My midwife said how great the private testing is and I'm aware it's more accurate but I'm wondering if it's more accurate enough as I'm struggling to get my head around it! Thank you x

I had one, it gave me a lot of reassurance as I was almost 40. For me, it was actually more about being able to make earlier decisions if something was flagged, whereas in the NHS it can take a long time to get through each stage and my '12 week scan' wasn't booked until nearly 13.5 weeks...

We found out our risks (and sex of the baby) at 10 weeks.

Thanks @CornishGem1975 x can I ask how did the risk identified compare between the private one and the nhs one? I'm just wondering how it's more reassuring than the nhs one given it only gives an estimated risk? Is it because the estimated risk is more accurate? X

I had the NIPT and it’s great for peace of mind. My understanding is it gives either a high risk, but you still need amino to confirm, or a low risk which is 1/10,000 risk. So very accurate for confirming if your baby doesn’t have a syndrome but if it’s confirmed they do, you still need invasive procedure for a definite diagnosis. More accurate than NHS which has a much higher false positive rate for ‘high chance’. Probably haven’t explained it very well, but if you are a worrier, like me, or an older mum, worth every penny IMO!

Because I'd had the NIPT the NHS didn't repeat the bloods. They just did a dating scan.

Yes - it comes down to the NIPT test being a lot more accurate than the NHS tests but it's worth remembering that both are only screening tests, not diagnostic tests.

it's a bit more accurate than the NHS one. I have a few friends that ended up with high risk on the NHS and then panicked and completely and ended up getting the NIPT which put them at low risk. so i did it first.

Saying that it is very expensive at around £400 so depends if that's money you can spare for some extra peace of mind

@Mumtotwofurbabies avoiding false positives makes a lot of sense in terms of that's how they can help avoid invasive procedures!

@CornishGem1975 thank you for explaining xxx

@Bells3032 thank you. I'd be stressed if the nhs and private one showed different results-I'd be scared I couldn't trust either!

X

@Bells3032

it's a bit more accurate than the NHS one. I have a few friends that ended up with high risk on the NHS and then panicked and completely and ended up getting the NIPT which put them at low risk. so i did it first.

Saying that it is very expensive at around £400 so depends if that's money you can spare for some extra peace of mind

Yes that was another reason. I was told that due to my geriatric age that my NHS risk would likely come back high risk so I wanted to avoid that scenario and extra stress.

[quote newtolineofduty]@Bells3032 thank you. I'd be stressed if the nhs and private one showed different results-I'd be scared I couldn't trust either!

X[/quote]
That's why if you have NIPT first, you don't have the NHS screening tests, because there's a good chance they would be worse but the NIPT would be the ones to trust.

Some people have NIPT after NHS results if the NHS have come back high.

Yes, I did it as I was over 40 and had had two miscarriages and it was very much worth the peace of mind. I'd say it depends on your circumstances. If you are young and have no history of problems, I probably wouldn't bother.

I had the NIPT because the hospital I’m at left it too late to fit me in for the combined screening and said I’d have to wait a further two weeks for the quad test which is even less accurate and doesn’t screen for one of the trisomy syndromes and then another two-three weeks waiting for the results.
I will say I was glad we had it as we got estimated risks much sooner and the fact it tests on foetal dna reassured me it was more accurate.
All mine came back 1,10,000 (limit of the nipt we had) which was great. However, I will say after receiving my quad test results eventually (T21- 1:5400 and T18-1:50,000) if I’d have got those results around my 12-week scan I would have saved the money and not got the NIPT.
So essentially if you have the time to wait and your combined screening risk are low, I’d leave it but if like me the waiting was too much, I’d go for it.

I did Nipt at 10 weeks and it gave us a piece of mind. If you decide to go private don't tell Nhs because they won't do your bloods otherwise ( this is a tip the clinic gave us).

Thanks ladies-you've made a good case for going for it 😍

I did it because the nhs one is about 85% accurate apparently and the nipt about 99% accurate. This is because the nipt looks at fetal dna. I came back low risk for both the nhs and the nipt, but felt a lot more reassured by the nipt. The scan I had with it was also a lot better than the 12 week nhs scan.

Did it mean for you ladies that you ended up having two scans in quite a short space of time? I think I read scans need to be two weeks apart? I'm wondering if I should cancel the pre-existing private scan we have booked in for the weekend if we're going to go ahead with NIPT! X

I'd say it's worth it. We had a 1:7 chance of baby having DS on the NHS test. We paid for the NIPT privately, not that it would chance our choice on keeping little one, just so we could be prepared and the NIPT came back 1:50000.

Noooo don’t pay for this! Since 1st July it’s provided on the NHS. Such a shame that no one has told the midwives!

www.gov.uk/government/publications/screening-for-downs-syndrome-edwards-syndrome-and-pataus-syndrome-non-invasive-prenatal-testing-nipt/screening-for-downs-syndrome-edwards-syndrome-and-pataus-syndrome-nipt

@SweetBabyCheeses99 not every NHS area is offering it FOC. We thought we qualified but it was delayed being rolled out to our area.

So does this mean basically I'd have the standard one then if it was high risk I'd be offered the NIPT instead of an amnio? Xx

I probably would have considered it if my NHS test ratios came back particularly high, but I wouldn't pay for it before or if the NHS one came back low risk.

There are a ton of genetic or developmental issues that can crop up, and many of them can't or wouldn't be screened for prenatally anyway so it boggles my mind that people pay around £400 privately just to screen for 3 specific disorders. It's obviously a personal decision, but I thought for myself the money was better spent elsewhere.

I have paid out quite a bit privately for various things eg a couple of scans (not for souvenir photos but because I had medical concerns but didn't meet NHS criteria for extra scans) and for some other private services and supplies for that weren't provided for free on the NHS. But I personally didn't think NIPT was worth it.

We had it with both our babies. I wanted to know ASAP if there was a problem and it’s also a lot more accurate. We had it done at 10 weeks so already knew the results when we went for our nhs dating scan. I would recommend not telling them though as with my first they then didn’t do the routine nhs bloods, which include Papp-a, which can be a marker of risk for IUGR.

I'd be stressed if the nhs and private one showed different results-I'd be scared I couldn't trust either!

I had a 1:165 risk with DC1 and 1:185 with DC2 so was offered NIPT on the NHS as they have done so in my trust for a long time. Both times NIPT came back as 1:10,000. But the NIPT is much more nuanced. Doesn't mean the NHS one was wrong, just that it has less accurate factors to analyse.

Thanks so much everyone x

I didn't even consider having it with my last pregnancy-I don't think my midwife made the difference in accuracy so clear at that point! I'm also afew years older now!!!!!

I like the idea of having the NIPT sooner rather than later. If my nhs scan didn't end up being until 14 weeks then those results took a week to come back it would be too late for NIPT right!? Xxx

We had it with our 2nd. Had the NHS one first and tbh hadn't even crossed my mind that if would come back high risk. It was only 18 months after my previous pregnancy and I was only 26 so expected all to be fine. NHS test came back high risk for downs syndrome. So we paid for the nipt with the intention of then having the amino if needed but obviously we hoped that would have a low risk result and feel reassured. Luckily we did get a low result on the nipt after a high one on the NHS. We also got to find out the sex at about 14weeks

I had the NIPT privately at 10 weeks with my 3rd pregnancy at age 41, was given a 1 in 2 risk of T18 and then had a CVS to confirm the diagnosis and had a TFMR at 14 weeks. If I'd waited until after the NHS results to get the NIPT, the TFMR would have taken place at least a couple of weeks later - as pp said, the 12 week scan might not even take place until 13 or 14 weeks, then if you go for an NIPT after that then it takes 7+ working days to get the results, then there will be time taken organising a confirmation of diagnosis (through either CVS or amnio) so that pushes back any decision you need to make until later in the pregnancy. A TFMR is always traumatic but personally, it helped that I was able to make the decision earlier in the pregancy (hadn't told anyone about it, wasn't showing, hadn't bought any baby items, didn't feel movements etc), and made the procedure safer and more straightforward, and I was able to proceed quickly after I got the NIPT results.

The £400 we paid was for a package that covered the NIPT (needed 2 attempts to collect blood), scan at 10 weeks, NT scan at 12 weeks, and the CVS/amnio is covered too if you need it (needed 2 attempts), so we got a lot of time and expertise for what we paid.