Has anyone arranged NIPT testing privately? If so did you do it before or after your 12 week scan/combined test?
I’ve been looking into it but don’t know a huge amount. I presume the results are just more accurate but you still get a likelihood score not a definitive answer is that right? Shock natural pregnancy with my 41 year old eggs so I imagine my risk will be a little higher than my IVF pregnancies.
Also if I’m honest I’m dying to know the baby’s sex. Don’t care either way but finding out on my first pregnancy made it all feel real and I loved it 🥰 Hope you’re all doing well xx
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Solly-44
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hey lovely, we did it via our IVF clinic at 11+ 5. It wasn’t cheap but a) I couldn’t wait for the NHS tests as just wanted to know (no patience!) and b) I wanted to know the gender too and you don’t find that out on NHS test. It was about £500 if I remember rightly. The results were more detailed than NHS as you got a summary of the report whereas with the NHS tests we just got the x out of 100 chance results which I guess is all you might need. Anyway for me the speed of the results and the gender were the reasons we went for it! x
I was so naive about EVERYTHING to do with pregnancy (never wanted to let myself hope!) that I'd actually never heard of NIPT until I started stalking this channel 😆 But reading previous posts convinced me to do it. Like you, I conceived with older eggs so was a bit worried.
I had it done just before I turned 11 weeks. I mainly wanted it because it seemed much more sensitive than the NHS combined test, especially if you're on the older side, as NHS use algorithms I think, which include age as a key risk factor. So I was afraid I'd come out high risk with the normal NHS screening basically just BECAUSE I'm over 40, and be massively stressed then have to do more testing, with more time passing etc. Whereas screening fetal DNA gives you results based on what they actually find, despite age. So for me it was well worth the money (and gave me another scan for reassurance! 😆 )
It does depend a bit on whether the trisomy results matter to you, I suppose. Some people take the view that they wouldn't stop a pregnancy if any of the 3 conditions they screen for are detected, so they don't do any screening. Others say they just want to know, even if the news isn't good, so they can learn more and be prepared, even if they wouldn't consider ending the pregnancy (and of course even NIPT isn't disgnostic, still screening, so you'd need to confirm any diagnosis the tests indicate).
There's also a risk that they sometimes can't get enough DNA in the blood sample so occasionally NIPT tests have to be repeated.
So it's a personal thing, but for us, it was a great decision 🥰 And my husband was desperate to learn the sex of the baby 😂
Thank you! I’d not heard of it either but I joined an American pregnancy site and everyone there seems to have them so I was intrigued!
Yes, I’ve heard that they’re more accurate for slightly older women because like you say the NHS algorithm factors that in, whereas NIPT is more data based. Hope I’ve got that right.
TBH I don’t know how much the results would influence what we do but I’d definitely like to know asap if we were facing a problem. So much to think about isn’t there?! Xx
I'm honestly really glad we did it. It cost 400 but totally worth it. I know there are lots of rarer conditions that none of the tests or scans can pick up (I work in rare diseases!) but still, it's good to get all the assurance you can I reckon. I like to know as much as I can 😂 xx
hi Solly,
I was going to have one at 11 weeks, so before my 12 weeks scan. but was told by my midwife that we wouldn't get the NHS NT scan if we got a private NIPT. As the NT scan: first trimester bloods (“the combined test”) also is indicative of other abnormalities (heart I think?) that the NIPT doesn’t look at, we were advised to get the NHS scans, and then decide if we wanted to get the NIPT privately. In our trust area we also get offered the NIPT on the NHS if we get a high probability from the combined testing (NT scan and first trimester bloods).
Maybe other asking your midwife for what happens in your area?
I can Definately relate to wanting the NIPT though and think it is likely we will get it anyway. Just for my own peace of mind.
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This is really interesting, in my area despite having the NIPT they mandated we had to have the NHS tests too! So clearly different in different areas x
That's really interesting! I understood that the NHS Combined Test only looks for the 3 trisomies, same as the NIPT one I opted for (some forms of NIPT do test for more conditions I believe, with an extended panel, but I felt the evidence wasn't as strong for those tests and they are more likely to give false postitives and false negatives ). The scan they give on the NHS when doing the Combined screening can detect some early structural issues I think , they check around 10 things don't they, so I just had that (at the dating scan) and declined the nuchal measurement and biomarker screening). Everywhere is different isn't it 😄 xx
I had the nhs nuchal scan and came back as high risk because of crazy hcg levels, I was then given a Nipt free - blood was taken the day after my scan. Results for nipt didn’t give me any numbers just said lower chance.
I paid for it privately at 10 + 4 as I wanted early reassurance and was also really impatient to find out gender. First test failed due to insufficient fetal dna in blood. Went along to my 12 week nhs scan expecting could still get their first trimester screening but they refused on basis I was getting a harmony test re-draw and they said the harmony/nipt was much more accurate than their initial screening. Private re-draw failed at 12 + 4, due to insufficient fetal dna in blood again. Cue major anxiety about having zero screening and a 4 week wait to get the third attempt at 16 + 4. During the wait I did manage to get a second trimester nhs blood screen but only covered Downs Syndrome and was 16 weeks before I got that result (thankfully very low risk). Finally at 17 weeks I got a result from the third nipt and all trisomies were the lowest risk. But the whole process cost me major stress and anxiety (as well as £££s) and the opposite of the initial reassurance I had sought. I also ended up paying for a private gender test at 16 weeks as was convinced the third test wouldn’t work and wanted something nice to focus on. I think it is unusual for the tests to fail like that but I did come across a lot of ladies who had experienced the same and I wish I’d known more about that possibility at the time. But I’m still glad I got a result from it in the end. xx
oh that sounds like a nightmare! Sorry you went through that, especially when as you say we do it for reassurance! Xx
Hi Solly, we went for NIPT as it’s a significantly more accurate test than the nhs one. If it was less expensive the would give it to everyone so for peace of mind and the bonus of an extra scan at 11 weeks we took the financial hit.
Similar to a previous poster the NIPT failed for me twice due to insufficient fetal DNA - apparently this is more common after IVF (although still very rare) and particularly after FET. I had the NHS screening and all came back low risk. For my second baby I didn’t bother with NIPT just did the NHS screening as if it had come back high risk I would have been offered NIPT by the NHS anyway but it was low risk again and both my boys are healthy and well.
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