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Pregnancy

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

NHS can't do NIPT due to vanishing twin. Does anyone know if this can be done privately?

14 replies

Rollycat · 11/11/2021 11:44

I am currently 14 weeks with an IVF pregnancy (double embryo transfer, but one stopped developing at 6.5 weeks) after three consecutive miscarriages. No cause was identified for my miscarriages apart from possibly age (41) as a contributory factor so I chose to have CUB screening. NT measurement was fine but overall result came back as 1 in 122 for Downs, so higher risk but lower than the baseline for my age (1 in 71). I opted for NIPT. I asked the midwife before electing NIPT if my result could have been skewed purely on my age, but she didn't know. I also asked if the fact that my pregnancy started off as twins could make a difference. She wasn't sure but she said she would make sure this info was noted. After having the blood test on Tuesday, she has just phoned to say the lab won't carry out the test, because the vanishing twin can give a false result. I'm pretty annoyed I wasn't told this a week ago. My choices now apparently are do nothing or have a amino. After my miscarriages, I'm very reluctant to have an amino based on a 1 in 122 chance, especially as I think it's becoming more likely we would carry on with the pregnancy regardless of the result. However, as the IVF and pregnancy so far have been stressful, I would have liked more certainty. Does anyone know (a) could it be purely be my age that means the CUB screening has come back higher risk? and (b) can the NIPT be done privately perhaps with an adjustment for the twin to give a more accurate result? I'm in Glasgow and I do plan to phone around some places and ask, I'm just waiting until I've calmed down a bit first! Any experience or advice anyone has around this would be really helpful, thanks!

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Rollycat · 11/11/2021 11:45

Oops, sorry for lack of paragraphs!

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Bells3032 · 11/11/2021 12:46

How far along were you when the twin vanished. I had the harmony test at 11 weeks. Lost twin at about 8-9 weeks and it was fine.

CaramelWaferAndTea · 11/11/2021 13:02

I had my NIPT done at the fetal medicine centre in London and they were very well qualified and helpful. Could try ringing them perhaps to see?

al1n · 11/11/2021 13:11

There's a mail order one you can do with multiples, if you google it it should come up x

Rollycat · 11/11/2021 13:31

Thanks everyone, I'll look into these. That's interesting @Bells3032 thanks. Twin stopped growing at 6.5 weeks and I'm now 14 weeks.

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N0N4M3 · 11/11/2021 13:34

Your age will have definitely been taken into account when coming up with the 1:122 figure - I'm surprised your midwife didn't know this. That figure is based on maternal age, 2 proteins in the blood test, fetal NT measurement, and fetal nasal bone length. I don't know if each of these elements carries equal weighting when coming up with the probability, or what the calculation is exactly, but maternal age is definitely factored in.

Bells3032 · 11/11/2021 13:45

Then 100% you can do it. The fetus doesn't start releasing dna into the blood stream til about 9-10 weeks hence why you can't do the nipt test til then

Rollycat · 11/11/2021 14:04

@N0N4M3 Thanks, that’s helpful. I know my NT measurement was normal and I’m almost positive they didn’t do the nasal bone length. The midwife did know that maternal age was included, it was more detailed questions
about the weighting, and whether it’s possible that if all the other factors are in the normal range, can solely your age can bring you into higher risk overall. She wasn’t sure. I might phone her back and get more detailed info on the blood results.
Thanks @Bells3032 will start looking for places to get it done

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Vegasdreaming27 · 11/11/2021 18:00

I don't think age alone makes you high risk. I'm 42 and mine came back at 1 in 5810. I hope you manage to get this sorted.

Dutchmum1980 · 11/11/2021 21:29

My screening test came back 1/28. They put all these figures if mine into a computer and it spews out a risk factor.:
Scan normal. NT measurement 2mm
Age:41.
IVF baby.
HCG 3.3 - three times higher than their normal range.
BMI
Ethnicity.
Time since last baby. Mine is 12 years.
All these figures made me high risk. But wasn't explained to me prior to me having the test.
So Ive spent a week in the most atrocious anxiety waiting for my NiPt test which has come back as low risk.
I had OHSS after my treatment and this may have caused my elevated HCG level....my ovaries are still very swollen.
I was lucky as I qualified for NHS funded test but I would pay privately any day of the week. Xx

ByTheSeaCatsandAll · 11/11/2021 21:43

Hi @Rollycat. I was in a very similar position to you last year - 42 years old, IVF pregnancy, double transfer and one embryo didn’t make it past 7 weeks. I was given a 1 in 12 chance for Downs Syndrome. I would strongly recommend that you contact the ARC helpline (Antenatal Results and Choices). They have up to date knowledge on testing options and were really helpful when I faced the same dilemma. There is a lot of conflicting information out there about NIPT and and all the clinics I spoke to refused to test me as they said the vanishing twin could affect the results. Wishing you all the best, it’s a very stressful situation to be in.

MCMelon · 11/11/2021 21:53

Yes you can. I was in this position in March. You need the SAFE NIPT which can be performed with a vanishing twin. I had mine at Alderley Edge in Cheshire but places in London offer this too.

Rollycat · 11/11/2021 23:03

Thanks everyone for sharing your experiences, it’s good to know there are some options. I’ll give the ARC helpline a call in the morning and take it from there. I agree there is a lot of confusing information about the NIPT online, and all the waiting is just rubbish. I appreciate you all taking the time to respond Smile

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Rollycat · 13/11/2021 13:27

Just a quick update in case it helps anyone in the future.
The midwife said my results were -
NT measurement 1.4mm
HCG - 2.02
PAPPa - 0.64
Phoned the ARC and the adviser said she these figures aren’t particularly concerning. The HCG is slightly raised but there could be various reasons for that. I’ve found that Ultrasound Direct will do the Vision test with a vanishing twin but there is a higher risk of a false positive. I’ve asked how much higher a risk it would be and just waiting to hear back.
I think we’ve pretty much decided to continue with the pregnancy regardless and not have an amnio (I know it’s a small risk, but I don’t think I can deal with the miscarriage risk after having three), so it’s really just a question of whether to pursue the NIPT for hopefully a bit of reassurance. I’m worried though that it’ll be positive, and I’ll basically not know whether to trust the result for the rest of the pregnancy.

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