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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

NIPT / NHS

26 replies

Sandrine1982 · 08/01/2019 10:55

Hi there. There have been many posts about this so sorry for yet another one. I am 36 years old and 6 weeks pregnant (my first ever pregnancy). I've got my first NHS scan and combined test lined up for when I'm 12 weeks. But reading up on all the info, I'm getting extremely anxious about the accuracy of these tests. I am a big worrier and all the low and high risk business just sounds a bit vague to me. Plus I'm scared that my age alone will inflate the risk significantly. I'm looking at private NIPT options (Harmony, Panorama) and thinking of having it as well as the NHS one. Have people done this? And what were your results from both? What was the difference in odds/numbers? And finally, what was the outcome when baby was born? I'm worried that the NHS test might cast a cloud over the private one although I know that in theory the private one is much more accurate. I basically also want to avoid having the CVS / amnio because of the risk of miscarriage. I would just to love to hear some stories from people who have had both tests - private and NHS. Thanks so much in advance. Sx

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2countries1bump · 08/01/2019 11:20

Hi. I'm the same age as you, first baby and did the NIPT before my 12 week scan. Midwife advised me not to do the combined test as I already had a more accurate result which indicated low risk. If you have the NIPT before your 12 week you might find it less anxiety provoking to do the same.

Not had the baby yet so can't comment on the accuracy question but the stats on NIPT are good enough that I think you can have confidence in it if you get a low risk result.

Sunshinegirl82 · 08/01/2019 11:21

I have had the harmony test in both my pregnancies at 10 weeks. Both came back as low risk results. I went onto have my 12 week NHS scan but declined the blood tests and didn't get the screening result.

The harmony/NIPT is much more accurate than the NHS screening. If you were to receive a high risk result with the NHS they would suggest you had the NIPT as one of the further testing options so in my view there really is no point in having the NHS screening following a low risk NIPT result. They will still take a nuchal measurement and flag up if that is high (it can signal other issues such as heart conditions etc).

I am still pregnant with DS2 but DS1 was born completely healthy and was a boy (as identified by the harmony test).

For me it was 100% worth doing the test and I would do it again with any subsequent pregnancy.

Original poster

Sandrine1982 · 08/01/2019 12:27

Thank you SO MUCH both. This is very helpful. Anyone else please do share your stories. thanks :-)

OP posts:

Megan2018 · 08/01/2019 12:59

I am planning NIPT as I am 40 (not far off 41) with first pregnancy (only 4+2 now).

How far ahead of the 10 weeks do you need to book it? I am wary of doing anything yet as it is still very early for me and I am aware of the mc risk. But don't want to miss the boat! I see my GP on Monday so plan to ask her view but also interested in when others booked theirs?

SylvanianFrenemies · 08/01/2019 13:07

I had a 1/3 risk from the nuchal measurement. I had harmony testing - it showed 99% chance of Down syndrome. This was confirmed by CVs and scan also showed major abnormalities. I'm having a termination if we decide to try again I will have harmony testing early on.

SylvanianFrenemies · 08/01/2019 13:11

Megan I was able to get the testing done the next day but most clinics seemed to have a wait of about a week. I would book about 9 weeks with a plan to seen at about 10 and a half.

Megan2018 · 08/01/2019 13:24

@SylvanianFrenemies
So sorry to hear that you are going through this, thanks for sharing.
I'll do as you suggest and contact at about 9 weeks.
I hope things go as well for you as can be expected in the circumstances.

Original poster

Sandrine1982 · 08/01/2019 18:57

@SylvanianFrenemies - so sorry to hear what you're going through. Wishing you lots of strength and best of luck for the future.

May I ask where you had your NIPTs done, guys?

OP posts:

MrsRyan15 · 08/01/2019 20:19

@Sandrine1982 I have NIPT test booked for tomorrow, will be 10+3 weeks and just about to turn 38.

Like you I was anxious that I would get high risk on NHS test given my age so decided to go private and get the more accurate test done earlier to (hopefully) put our minds at ease.

@SylvanianFrenemies so sorry to hear what you are going through.

StargazyDrifter · 08/01/2019 22:33

I had my NIPT yesrday at 14 weeks. Wanted be absolutely certain things are ok after 3 losses, all in 2018, and then, finally, a successful pregnancy (touch wood!). 😍 As my losses were 'unexplained', and the most likely reason behind those is chromosomal abnormalities, we wanted as clear and precise an assessment as possible. DH's age also a factor.

Our reasoning for doing it this way was that miscarriage is less likely after 12 weeks, so we'd be more sure the pregnancy would stick after that point, plus the NHS 12 week scan would confirm thinngs we're in track so a miscarriage after NIPT seemed less likely. Also, earlier on the likelihood that they need to re-run the NIPT is higher and I knew that'd really stress me out.

The NHS results came back today were 1:800 for Down's and 1:20,000 for the other two. All considered 'low risk' as far as I can make out, but I'd rather a more accurate score on Down's. At 14 weeks they also checked over all of the baby's the major organs and limbs and talked us through what's what in a way the NHS scan didn't allow time for. The baby is also very cute at this stage!

We went for the Panorama over Harmony because the inaccuracy rate was a bit lower. Didn't go for microdeletions as risk is remote and margin for error is higher even on NIPT.

StargazyDrifter · 08/01/2019 22:34

SylvanianFrenemies so sorry to read your news. Sending you hugs.xx

Kescilly · 09/01/2019 01:56

I felt like you and had the Harmony test done. Unfortunately it did not return any results, twice. We continued to the NHS testing and while we are technically low risk, it still seems quite high to me.

I think in my case the Harmony test made me feel worse and has cast a bit of a shadow over my pregnancy. In the back of my mind, I worry that I didn’t get a result because something is wrong.

WhirlieGigg · 09/01/2019 02:04

I had the NIPT at a private clinic because I didn’t feel the NHS test was accurate enough. The result was low risk and it was worth it to give me peace of mind for the rest of my pregnancy.

PBobs · 09/01/2019 05:24

@SylvanianFrenemies so sorry.

I had the Harmony NIPT even though the nuchal measurements were well within the limit. I live overseas so timeline is a bit squiffy but I still got the results within around a week. I haven't given birth yet so cannot speak to accuracy but I did find it reassuring. If you want 100% certainty then invasive testing is the only way. Harmony etc still only give you odds but they work for me. My obgyn said I should wait until 12 weeks to get the bloods taken to ensure there was enough foetal DNA so I wouldn't have to get it done again.

Original poster

Sandrine1982 · 09/01/2019 10:11

Thank you all. OK, so it's better to wait until 12 weeks? I was planning to get the Harmony or Panorama test at 11 weeks + 4 days, so that I can get the results around the same time as the NHS combined test.
Does that sound too early? Anyone had an unsuccessful test because they did it too early? x

OP posts:

MustStopSnacking28 · 09/01/2019 10:40

Hello, I was 27 when I had the NHS screening and came back as 1 in 110 for all three trisomies. I just accepted the NHS screening as I didn’t even give it a second thought that there would be any issue.

We paid for the NIPT (it was the Iona I think because it was through st Mary’s in Manchester) and came back as 1 in one million - much more of a relief.

My advice (and also what I will do if I have another baby) would be to pay for the NIPT if you can afford it, it’s nuch less accurate and hopefully the result will be fine and save you weeks of worrying if the NHS one isn’t what you hope for. Personally if we can’t afford the test next time round I wouldn’t even have any NHS testing as I think it actually wouldn’t make a difference for our decision anyway. But that’s a very personal thing and I think it’s easier for me to reflect after having a healthy baby than it was when I was pregnant.

Wishing you the best of luck for your pregnancy

MustStopSnacking28 · 09/01/2019 10:41

Much MORE accurate sorry for the typos!

Original poster

Sandrine1982 · 09/01/2019 12:09

Thank you, @MustStopSnacking28, this is very useful. It's interesting to see the difference in the two results! In your case that's a massive difference. In France I think the threshold is 1/250 (so stricter than here) below which they offer amnio / cvs. I must say that anything around 100 or even 200 would still make me worried. I'm definitely booking the NIPT....
Good luck with your pregnancy too :-)

OP posts:

StargazyDrifter · 09/01/2019 22:17

Sandrine1982 there are probably stats online about which week you're in and likelihood of not getting a reading, I'd search by name though, i.e. Harmony, Panorama etc.

PinkAvocado · 09/01/2019 22:46

I had the Panorama test at 9 weeks as I was nervous about my age (36 at the time). I then chose not to have the NHS test at 12 weeks although did have the scan to check for other things and to date the pregnancy.

Original poster

Sandrine1982 · 10/01/2019 09:50

Thanks both, I'll check. ;-) @PinkAvocado, do you mind my asking, what is the Panorama result expressed in? As a percentage? And how quickly did you get your results? Thanks

OP posts:

PinkAvocado · 10/01/2019 14:49

I think it came back as ‘very low risk’ and they can’t give more than that. Results were in 10 days and it cost about £400.

anniehm · 10/01/2019 14:59

Another perspective is - what would you do if the results are not good? If like me you would not abort then why spend the money. We had a detailed scan due to markers on the standard (18 week then) scan and trialed the tech that's now routine but declined further testing as I decided not to know.

Hiphopopotamous · 10/01/2019 15:24

@anniehm
We said we would do testing even though we would not abort a pregnancy - in our case it would help with being more prepared.
Eg planning to stop work earlier in case of preterm labour, making plans for childcare in case we are admitted to hospital for a long time, not planning visits from friends/relatives to stay over etc.

PinkAvocado · 10/01/2019 15:26

If like me you would not abort then why spend the money

We too wouldn’t have aborted but it gives you more time to be prepared.

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