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Pregnancy

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

To NIPT or not to NIPT?

15 replies

Rachae · 18/06/2023 14:31

Hey! Really struggling with this one... appreciate any thoughts!

I'm 38 - second baby on the way and I know I ovulated late. (So I'm already worried about the egg quality this cycle)

What's the benefit of paying for the NIPT/ Harmony test early, prior to NHS screening please? If you wouldnt mind sharing any experiences?

I know my 12 week scan will be late as my booking appointment isn't until 12 weeks! So I'm worried I won't get the NHS screening done in time. But... I've also heard that they'll detect Edwards or Pataou on the 20 week scan anyway as it becomes more obvious.

We're not bothered about downs syndrome and so wouldn't have an amnio for this if it came up. Just mulling over if £400 is worth it and would be great to know all the advantages of knowing early.

(I'm also dubious NHS would even act on my private test at 10 weeks... would they recognise it and give me the amnio... Or just say it's their combined test that's the qualifier anyway?)

Thanks! Xxx

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OhhhhhhhhBiscuits · 18/06/2023 14:33

I personally did and would get the NIPT especially at your age (I was 39). It was peace of mind for me as I probably would have made the decision to terminate. I also would want to know earlier than 20 weeks.

The NHS should take your test results into account if they came back high risk.

38andtrying · 18/06/2023 14:54

After 14 weeks the NHS will give you the quad test, it's not as good as combined apparently but it's available, if you're in England and that comes back high risk they will then give you an NIPT I believe so maybe that's an avenue to look into ?

38andtrying · 18/06/2023 14:55

I'm 38 and live in the North of Ireland, screening on pregnancy is not given at 12 weeks scan, no screening at all is given in pregnancy unless you request it and only quad rest is available, if that comes back high they won't give you an NIPT either and amniocentesis is only option along with a more detailed scan, England has way more options though

BackOfTheMum5net · 18/06/2023 15:05

If you’re in England and actually have cause to need the NIPT they would give it to you anyway. I suppose it depends on whether you would be worrying in the meantime or whether you could would just worry while waiting for NIPT results, if that makes sense?

CR7 · 18/06/2023 20:17

Hi @Rachae xx

I am 42. 10+ 3 with first after many unsuccessful rounds of ivf. Even though I had pgta testing I also opted for NIPT last week as nhs won't do till 16 weeks and I'm not prepared to wait. I have attached what I went for. It was cheaper at £359 than the Iona which most places offer and covers way more. Results are seven working days and can be done from 10 weeks. I went on 10+1 as want to know asap.

To NIPT or not to NIPT?
Rachae · 18/06/2023 20:39

Thanks everyone for your responses - really appreciate it.

@CR7 that's interesting thanks - I've only seen £400+ Would you mind sharing the company name with me please? I think I'm just looking for the two major ones really xc

OP posts:
CR7 · 18/06/2023 20:40

@Rachae it's veracity - I went here for it.
mybabycompany.co.uk/online-shop/nipt/veracity/

Gamechanger2019 · 18/06/2023 20:44

I just had basic 12 week tests and I was 37 when I gave birth. I regretted not paying the ££ throughout my pregnancy so I’d say do it to put your mind at ease. Everything was ok with my little boy but it played on my mind a lot.

CR7 · 18/06/2023 20:47

@Gamechanger2019 exactly my thoughts. It's been such a long road for me and I am a granny - I'll be 43 when I hopefully give birth!! I am already high risk so anything I can do to give me peace of mind I'll go for it xx

CC4712 · 18/06/2023 20:57

After 4yrs TTC, I got pregnant with my 1st at age 38 and chose NIPT at 10 weeks. Unfortunately, it showed patau syndrome (trisomy 13). They then did a more detailed scan, and even that early- things were obvious on the scan. Shadowing in the brain, a cleft face (not just a cleft lip!), umbilical hernia and more. I chose TMFR. For me, I was glad to have the option of this so early on. I've read on MN of ladies not having it done till 16 weeks on the NHS. I was glad that I wasn't showing, hadn't told anyone and could try again sooner. Waiting till the 20 anomaly scan would have been torture! Plus- with this condition, there is the real risk of miscarrying at anytime or still birth.

My advice re- finding a company for the NIPT:

  • SAFE, Harmony, nifty, IONA are all essentially the same test, just a brand name (like a hoover is just a brand of vacuum cleaner)
  • Ask where their processing lab is. Originally, years ago, all samples were tested in the USA, but more places in the UK can now. I'd always chose a UK based lab because the results are quicker
  • Being overweight can increase the risk that the foetal blood might not be picked up, so a repeat might be needed. Sometimes though- it cannot be detected even with a repeat
  • Ask the clinic what will happen if there is bad news? I've read on here where people have the result via an email or text only, and then told to find their own abortion clinic or consultant for further advice! Absolutely appalling IMO.
  • Speak to your partner about what you'd do with the results. Better to discus beforehand and know how each is thinking

Best of luck whatever you decide to do OP x

CR7 · 18/06/2023 21:18

CC4712 · 18/06/2023 20:57

After 4yrs TTC, I got pregnant with my 1st at age 38 and chose NIPT at 10 weeks. Unfortunately, it showed patau syndrome (trisomy 13). They then did a more detailed scan, and even that early- things were obvious on the scan. Shadowing in the brain, a cleft face (not just a cleft lip!), umbilical hernia and more. I chose TMFR. For me, I was glad to have the option of this so early on. I've read on MN of ladies not having it done till 16 weeks on the NHS. I was glad that I wasn't showing, hadn't told anyone and could try again sooner. Waiting till the 20 anomaly scan would have been torture! Plus- with this condition, there is the real risk of miscarrying at anytime or still birth.

My advice re- finding a company for the NIPT:

  • SAFE, Harmony, nifty, IONA are all essentially the same test, just a brand name (like a hoover is just a brand of vacuum cleaner)
  • Ask where their processing lab is. Originally, years ago, all samples were tested in the USA, but more places in the UK can now. I'd always chose a UK based lab because the results are quicker
  • Being overweight can increase the risk that the foetal blood might not be picked up, so a repeat might be needed. Sometimes though- it cannot be detected even with a repeat
  • Ask the clinic what will happen if there is bad news? I've read on here where people have the result via an email or text only, and then told to find their own abortion clinic or consultant for further advice! Absolutely appalling IMO.
  • Speak to your partner about what you'd do with the results. Better to discus beforehand and know how each is thinking

Best of luck whatever you decide to do OP x

This is excellent advice. Terribly sorry you had to go through all of this xx

Rachae · 18/06/2023 21:49

@CC4712 Thank you so much for sharing and I'm so so sorry that you went through that xxx It's so kind of you to share and I'm sending you a big virtual hug xxx

OP posts:
notes1 · 18/06/2023 22:08

The benefit of doing the NIPT is that you'll get the results several weeks earlier than following the nhs route which is beneficial if the test comes back indicating a trisomy and you decide to TFMR.

My results came back indicating a trisomy and I was referred to fetal medicine 2 days later. I could have acted on these results because the NIPT is accurate but choose to do a CVS test which was carried out on the same day as the fetal medicine scan.

I think the NIPT is well worth the money to either give a peace of mind, or to give you information much earlier on which to base your next steps or decisions.

CR7 · 25/06/2023 11:35

I've just had my NIPT back and everything came back very low risk. I'm delighted I can cross something off the anxiety list! I had pgta but that's more of a screen and not diagnostic. At 42 it's not something I wanted to risk. By testing at ten weeks I can now try to enjoy the pregnancy a bit more. 12 week scan this week xx

Rachae · 25/06/2023 15:29

@CR7 that is lovely news! Congratulations xxx

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