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Original poster

To pay privately for NIPT?

31 replies

Beachsidesunset · 02/03/2022 09:54

If, at the age of 45 you got a low risk result for Downs (1 in 900) and Edwards/Patau (1 in 40,000) would you pay privately for the Harmony?

Combined screening is 90% accurate, and NIPT is 99%.

Reasonable - at that age it's always worth double checking.
Unreasonable - the combined test is good enough.

OP posts:
Mynameisnew · 02/03/2022 09:57

It depends. I did the combined screen on two pregnancies and the risk came back as "low". I left it at that.

For another pregnancy, I did the combined screen and it came back as borderline. They offered me an amniocentesis to be 100% sure, so it was at that point that I elected to do a private NIPT.

Ohsofedupwiththis · 02/03/2022 10:01

I did the Harmony test due to a higher risk after Nuchal screening.

I am so glad I did.

If it will give you peace of mind then its absolutely worth it. But with the screening you have already had and this risk ratio, it will probably tell you what you already know.

emmathedilemma · 02/03/2022 10:02

It depends how the result might affect any decisions you might make if it’s positive…..

MarshaBradyo · 02/03/2022 10:03

Reasonable- I was part of a study at Kings which meant we had it at no cost, very lucky but it was worth it for the reassurance

Treaclepie19 · 02/03/2022 10:05

Reasonable, but just be aware that it's not a guarantee of nothing being wrong.
We had a high nuchal measurement (so admittedly a sure sign something was wrong) and had a private NIPT which came back fine. We later had an amnio which showed our little one was very poorly.
I'm (badly) trying to say sometimes if there's a concern an amnio is more useful. Though obviously not without it's risks.

SatinHeart · 02/03/2022 10:06

If you can comfortably afford it and it will give you peace of mind for the rest of your pregnancy then why not.

As @emmathedilemma says, also depends if you think you will do anything differently based on the result.

SleepingStandingUp · 02/03/2022 10:08

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

RandomQuest · 02/03/2022 10:08

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!

IamtheDevilsAvocado · 02/03/2022 10:12

Depends whether it will change the progression of your pregnancy.

I would have it... Very personal choice though

babyjellyfish · 02/03/2022 10:13

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

apintofwine · 02/03/2022 10:25

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…

CornishGem1975 · 02/03/2022 10:31

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.

Original poster
Beachsidesunset · 02/03/2022 10:35

The conclusion of the most recent study into the combined test accuracy. Full text available on PubMed.

Without saying what decision we might make after a confirmed result, it is important for us to know, so I think I'm leaning towards doing the NIPT, even knowing it's not diagnostic. Discovering the sex would be a pleasant bonus.

To pay privately for NIPT?
OP posts:
Shamoo · 02/03/2022 10:37

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.

TurquoiseDress · 02/03/2022 10:39

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

TurquoiseDress · 02/03/2022 10:40

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

TurquoiseDress · 02/03/2022 10:42

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

ChampagneLassie · 02/03/2022 10:42

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.

apintofwine · 02/03/2022 11:00

@Beachsidesunset

The conclusion of the most recent study into the combined test accuracy. Full text available on PubMed.

Without saying what decision we might make after a confirmed result, it is important for us to know, so I think I'm leaning towards doing the NIPT, even knowing it's not diagnostic. Discovering the sex would be a pleasant bonus.

Ok fair enough, my apologies.

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?

MotherOfCrocodiles · 02/03/2022 11:16

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.

buzzandwoodyallday · 02/03/2022 11:25

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.

welshladywhois40 · 02/03/2022 13:50

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

Inkyblue123 · 02/03/2022 15:46

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.

Original poster
Beachsidesunset · 02/03/2022 16:09

The screening person said based on my age alone, the risk was 1 in 34. When they added the bloods and scan info, it went up to 1 in 900. I was shocked and asked them to double check!

I think regarding the 90% accuracy, if it means that 1 in 10 cases of Downs are not picked up with the combined screening then I will have the NIPT. As a previous poster said, time is ticking on.

OP posts:
MrsMingech · 02/03/2022 16:13

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

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