To pay privately for NIPT?

Sorry, seen you’ve had it now - congrats!

I was 40, got low risk too with the NHS and still paid privately for Nipt. It’s very accurate for the 3 main trisomys - 13, 18, and 21 , although not so accurate for others. My understanding was it is more accurate than the NHS tests for the main 3 and I wanted to know asap.

If you are an older mum to be, would consider terminating ( after amniocentesis to be completely sure obviously) or just want to know early so you have more chance to prepare for extra care etc and can afford the nipt test, it seems daft not to have it to me 🤷‍♀️

@Beachsidesunset what did you think about VeraGene please? I am thinking of doing this but I have read that there is apparently a high risk of false positives.

I'm 32 and paid a few weeks ago, worth every penny to me, got the results in 4 working days when I had just turned 11 weeks.

I think the value does depend on what your decision would be, if you would continue with the pregnancy regardless then probably not worth the extra cost but that wasn't the case for us.

It's entirely personal, related to your own perception of risk. There is no right answer.

Personally I wouldn't unless the combined screening test was 'high risk'.

It sounds like you wouldn't terminate either, but would just like to know for planning.

If I had the money at the time, yes I absolutely would.

Absolutely. Combined screening g is a risk assessment - it is nowhere near 90% accurate. I am extremely surprised you came back as low risk at your age. I was 44 and got a 1 in 5 chance of Downs. I knew nothing of NIPT at the time and found the whole process extremely stressful. We did pay to have the NIPT done, even though we were led to belive our baby was Downs - by a midwife with very poor English. We had already decided to keep her and did the test to prepare ourselves - I wanted to confirm what the midwife had told me on the phone. I would have done the test earlier had I known about it, it really put my mind at ease, especially after experiencing recurrent miscarriages.

With my last I was 41 and paid for the harmony test. Given the risks are higher at our age I wanted more surety with the results

I paid both times for the harmony test for my pregnancies when I was 38 and 39 despite the nhs scan coming back ok. I knew that I wouldn't be able to cope with a severely ill child and thought it better to spend the money and have extra peace of mind.

Good luck op. I hope your pregnancy goes well.

Only you can decide if it's worth it. That study suggests that 10% of downs cases and a lower % of other are missed. That was too much uncertainty for me but maybe not for others. It's subjective.

An advantage of NIPT is you can do it earlier. For me, I would have terminated (sorry if that offends anyone) and saw significant advantage in being able to make that decision at 10 weeks rather than 15 or so on the nhs screening pathway. This might not be relevant to you as it sounds like you are already at the time point post combined test.

I think I was coming at it from the other direction. As in, I had a high risk result, what were the chances that was correct?

I was tempted to do amniocentesis for 100% accuracy as after reading Expecting Better the risks quoted by NHS are very old and it poses virtually no risk to the baby, it is uncomfortable though and you can't just opt for it on NHS so you have to go private and there was no-where local to me that did this.
I researched into NIPT and decided that if this showed a low risk I'd be comfortable with that. I opted for Veragene which screened for many more conditions than Harmony or the others. The clinc I visited also did a scan which was seemed much more detailed (both in the quality of the imaging and the sonographers explanation) than any of the NHS scans. My risks from this came back incredibly low and particularly from the scan I had much more confidence about health of baby. At 45 I would definitely throw money at private screening and TBH if I were that age I'd have probably opted for amniocenteses.

Also I had just turned 39 shortly before finding out I was pregnant

Just to add, when we went in for first part of Harmony testing I'd only had a private early scan at around 7 weeks

Not had the combined test at that point, I don't think

YANBU

It's a very personal thing

We paid for Harmony with DC2, had a previous missed miscarriage, discovered at the dating scan which was devastating

I just wanted to know as much as we could early on and then face any decisions we may need to make

It's not cheap- think around £400 but it was certainly worth it in terms of reassurance re the trisomies it tested for.

Was totally aware that other issues might be picked up at a later date ie at the anomaly scan

We had it with a 1 in 70 risk, not sure we would at 1 in 900 but it’s totally your choice and there is no right or wrong. It did give us peace of mind.

We weren’t allowed to find out the sex though, not permitted in our county even though we were paying. Not relevant to us, but just because the PP raised it I thought I would say.

I paid privately for the NIPT because I was 39 and acutely aware of that. I didn't want to be at the mercy of the NHS who at the time seemed to be doing the dating scans and bloods etc around 13 weeks - in itself not a problem but if you need more tests, CVS, amnio etc and were in a position where you wanted or needed a termination, I really didn't want that late on (a friend was 18 weeks + by the time they got to the decision-making point) so for me, I just wanted to be able to make early decisions if needed.

I had it with both pregnancies (one low risk and one high risk at NHS screening) and would do it again straight away with any other pregnancy.

What do you mean by combined screening is 90% accurate? Do you mean the screening at 12 weeks, cos that is nowhere near 90%, just gives a probability based on historic trisomy pregnancies…

Would the result make any difference to your decision about whether to continue with the pregnancy?

Depends whether it will change the progression of your pregnancy.

I would have it... Very personal choice though

I’d always have the NIPT if I could afford it. If you want to know you can find out the sex which was a deciding factor for me!

I'd say
If you would end the pregnancy if you got the wrong results, get it done.
If you would compete the pregnancy if you got the "wrong" results I wouldn't bother