Private NIPT experiences

[Utardelis]

Hi all,

I was hoping people would be able to share why they did/didn’t go for private NIPT

It is not something anyone I know has ever had done but I have seen it advertised a lot and in discussions on here

Just wondering if it’s worth it or not?

thank you xx

I didn’t in either of my pregnancies, we are both in our 20’s, healthy, no family history of genetic conditions, I had the NHS screening tests which came back as incredibly low risk, no concerns on scans, and that was enough for us.

I would say whether it is worth it depends on how anxious you are about having more accurate results than the NHS screening, what your personal risk factors are & what your standard screening results were.

The NHS only offer NIPT to those with a higher chance result of >1/150, I have a friend who was just slightly below this so wasn’t eligible for NHS NIPT but it was close enough that she chose to have an NIPT privately for her own peace of mind.

I also have a friend who had a private NIPT for peace of mind due to family history.

This is so helpful thank you!
I am mid 30s but I think I will wait for the NHS screening and can always pay privately after that

We waited for NHS screening.
High risk is anything up to 1 in 150 and I came back as 1 in 145 so just within that.
This means you get it for free.

We may have paid if it came back medium risk.

The disadvantage is you can’t find out the sex from the NHS one if that’s something that matters, but by that point I was 13 weeks so not too far from finding out at 20 weeks.

Overall I felt grateful to not have to pay for it as that’s all money that’ll be useful in a few months’ time!!

I did it because I was late thirties and wanted to know asap. All was good

I didn't. To start with, I couldn't afford it but even if I could, I just don't see the point. The NHS offers screening for free so why would I pay privately for something that isn't actually diagnostic? It tells you a chance of something being wrong. It doesn't tell you anything for certain. And it isn't even completely accurate.

I am in my mid 30s and I am considering this because of my age. I live in Northern Ireland so we dont actually get any screening tests on the NHS so my only option is to pay for it. Im still early so I havent fully made my mind up yet. Its annoying we get no tests at all here!!

I paid, was 39 and long awaited ivf pregnancy with history of mcs, had it drilled into me how unlikely it was to be viable never mind healthy. Was happy to just have nhs combined screening and go from there but at 12 week scan baby wouldn’t cooperate despite admirable efforts by the sonographer. NHS would only offer me quads test after that (screening for downs) in three weeks. It’s not like I felt I could end the pregnancy whatever the result, but I wanted to tell my family on my 40th bday and to cross a worry off my long list of worries.

editing to add, it was extra nice because even though I’ve never thought I’d want to know the baby’s sex pre birth, we got horrible news at 16 weeks that I was high risk for late loss/ptb, and when an operation to help reduce the risk failed, I decided I wanted to get to know and love the baby asap, so it was a bright silver lining on a horrible day. I hadn’t looked at the sex in the nipt report, but had it ready to open :)

I didn’t have it done in my previous pregnancy but this pregnancy I have. I’m now mid 30s and multiple losses by anxiety is through the roof.

I waited till my 12 week scan did the nhs blood test and then panicked so did the NIPT. While my nhs one came back low risk I still think I would have done it. I’m just so worried something will go wrong

I had a private NIPT as early as possible with all my pgs. With my second pg there was a brief delay with getting the results as I had to repeat the bloods, and then I came out with a very high risk. I had a cvs which diagnosed t18 and I organised a tfmr as quickly as I could.

The tfmr was a quick and straightforward surgical abortion done under sedation at 14 weeks. My experience of it was that I went to sleep and it was all over in 10 minutes without any pain or complications afterwards and I went home the same day. If I had been diagnosed later and had a longer waiting time, the surgical option wouldn't have been possible and I would have had to undergo a much more traumatic procedure that would have meant essentially going through labour and needing more recovery time (I conceived again a couple of months afterwards and went on to have a healthy baby). So for that reason I am pleased that I had the test done privately. I was in my 20s and the risk of T18 is higher with older parents but still fairly random and I encountered other younger mums on forums who had gone through the same, so age is only a loose predictor of risk.

I have - I’m 42 and have had two miscarriages. I wanted to know as early as possible if anything was wrong. My NHS 12 week scan was booked for 13 weeks and I didn’t want to wait for screening results after that and then possibly NIPT/CVS if they came back high risk. It felt pushing things very late! Private NIPT came back very low risk, 100% worth the money for the peace of mind

Hello! I had a private NIPT in my pregnancy last year as I was 37 and decided it would be good to know all was OK early. Mine came back as high risk for T18 and as it was private that’s where their involvement ended. It was quite a shock to have the update from the clinic and for them to say you have to get in touch with your NHS team. The NHS were great but as NIPT isn’t diagnostic (there are approx 20% false positives) you still need to go through the NHS pathway for CVS or Amnio and you can’t have an amnio until at least 15 weeks.

I’ll never know if the NHS screening would have flagged anything and let to NIPT but my scans that were done at the time of the amnio showed fetal abnormalities so I think we would’ve got the same info/timeframe really.

I am now pregnant again and was given an NIPT at 11 weeks on the NHS free of charge and thankfully it was all clear. If I could go back in time I don’t think I’d have the private NIPT again as it just gave us lots of worry with nothing we could do about it for what felt like forever.

I paid for it because of the relatively high false negative rate of the standard test. I wasnt worried about getting a bad result from the standard test, more about getting a good result that wasn’t true.
The price of it seemed a drop in the ocean compared with the cost of bringing up a child with aditional needs, though I appreciate that not everyone has the disposable income to be able to follow this reasoning.

I paid to have it done at 10 weeks because I was 40 and knew that the NHS screening would probably come back high risk, so wanted to remove the worry, was worth the money for us and came back low risk.

NIPT wasn’t available when I was pregnant but I paid for a Nuchal scan. The Nuchal scan came back with a relatively high risk of Downs for DD so I also had amniocentesis.

And I had the tests for both pregnancies because I would have terminated with a positive Down Syndrome result.

I didn’t for both pregnancies at 10/11 weeks. I wanted to know asap and the cost wasn’t an issue so we went for it. I don’t know anyone else personally that had it done.

I did because a girl I know got to 20 weeks and found out her baby had Turner’s syndrome and had to have a TFMR and I didn’t want to experience that

I did. This was before the NHS offered any blood-sample based genetic testing along with /after the 12-week scan. I was in my late 30s and wanted reassurance about Down Syndrome as early as possible.

I did because I was getting married at 17 weeks pregnant (mid 30s) and didnt want to wait for the triple test at 13 weeks plus an extra couple of weeks to diagnosis if there had been an issue. With the NIPT we got the all clear at 12 weeks. Obviously a TFMR would still have been horrendous 4 weeks before the wedding, but hopefully slightly less horrendous than a week or so before at a much later gestation, if it had come to that.

Having done the NIPT for DC1 as above, it kind of made sense to do it for DC2 and DC3 as well, especially as I was in my late 30s and early 40s respectively by then.

I didn’t in my first pregnancy because I didn’t really know you could pay for it privately, and I also got an extremely low risk result for all three conditions (less than 1 in 10,000) I recall.

However, when I was about mid-way through my pregnancy I met a woman who had a baby with DS who had also received an extremely low risk result in the thousands which clearly was false, and she was clearly quite damaged by the experience.

It absolutely set me off and I spent the rest of the pregnancy paranoid and extremely uncharacteristically anxious that my low risk result was false. This was made worse by me Googling, which in turn started bringing up various Instagram accounts where women had experienced the same.

Second time round, I wasn’t willing to risk the same potential anxiety spiral and so just got the test at 10 weeks.

I know what you mean but it’s not really a false result if you get low risk like 1 in 10,000 from the NHS combined screen, but then the baby has DS.
It’s a screening test not a diagnostic test.
it just means you were the “1” in the 10,000 people that actually ends up having it.

I did it in both of my pregnancies at 38 and 41. I wanted to know super early if there was trisomy or other very serious issues so I could do termination very early in the pregnancy and hopefully reduce the emotional turmoil (because I wouldn’t be yet settled into pregnancy and haven’t had my hopes up).