If combined test high risk- what were you offered next?

[Elouera]

I read on ACR that NIPT is only being offered on NHS in Wales, Scotland in Summer and not in England as yet (after high combined test). I'm in London, 42 and previous T13 pregnancy, so anticipate a high risk combined test. Were you offered NIPT, CVS or something else after high combined test results and which area are you in?

As far as I’m aware (the thresholds might be slightly different) but for most London hospitals if your combined test result is under/around 1:150 then you are offered NIPT or Cvs or even an amnio (at a later stage).

Thinking of you, I’ve been through it and it’s highly stressful 💐

Also - Depending where you are, you might be able to find out via your specific hospitals maternity page - they sometimes have a section called screening, that might have an email dedicated to the FMU unit Midwives or ‘screening midwives‘ who should be able to tell you.

NiPT is being offered for free in some areas of England, for example, Birmingham. I had a high risk result for Downs based on bloods and age. Scan and Nuchal measurement were all fine. I d talked through my choices over the phone. I was too late for CVS so was given the options of amnio or pay for NIPT privately. This was considered an acceptable choice given my circumstances (t13 and 18 were not a concern and NT was within normal range). We decided to pay for NIPT at Birmingham Women's but did have to wait two weeks for it which was incredibly hard. As it came back 'highly unlikely' we decided not to have amnio.

Also, I rang ARC who gave me the names of private NIPT providers in our local area and ones they recommend. They were an invaluable source of information.

Thanks for the advice. I'm debating just paying for NIPT again, prior to combined test, or waiting. I'm just worried, that if combined test isn't till 12/13 weeks, IF I'm offered NIPT, it may not be till 14/15 weeks, then possibly 16 before results. (Previous T13 pregnancy was abroad, hence learning process here).

With hindsight I wish I'd had Nipt prior to the combined test. With my age (40)i was more likely to come back high risk anyway, throw in dodgy bloods and it was very high risk. This meant we didn't get nipt results back till 16 weeks. I could have saved so much upset if my nipt result was back for 12 weeks.

@Liveforholidays- yes, that's what I'm worried about. How did you results go?
My 1st pregnancy, I had the NIPT at 10 weeks, results 4 days later and TFMR at 11+1. A big difference between 11 weeks and 16+ and was glad to be able to have a choice so early on.

Hey, I decided to have NIPT before 12 week screening due to age etc - I did this with my son too and had low risk results at the time of my 12 week scan which gave me extra reassurance. This time however I had the NIPT done at 11 wks and unfortunately an increased nuchal measurement was picked up which made for an incredibly anxious wait! My NHS scan / screening was the following week (before NIPT results were back). It felt better to have the NIPT in progress already but wish I’d had it done a bit earlier... I got a low risk result this time too and this was confirmed by the results of the amnio (which we had because of the increased nuchal). There have been some on this board who have experienced false positives from NIPT which must be so stressful but in my experience it has given me reassurances both times I’ve had it. I felt it was money well spent!

@Elouera I got a'highly unlikely ' result following my 1 in 13 chance of DS. I'm 34 weeks pregnant now and all scans to date have been clear.

I had NIPT test in England through the nhs. It was a reduced rate so we did have to pay

Be aware that the NIPT is only really reliable at picking up t21.... the rates of false positive in other trisomies can be fairly high

@PrayingandHoping- Was your NIPT offered after showing a high combined test? But not the £400-$500 it often is when private?

Yes, I know its not as reliable for T18/T13. In my 1st pregnancy, the T13 result on NIPT was confirmed on scan and then autopsy, so it was 100% accurate in our case.

No I had a low risk 12 week! She then scanned small at her 20 week scan. So then we were referred to fetal medicine and every test under the sun was run! All clear and scans were fine (other than small). So we declined an amnio as she had no physical issues on scan so were offered the NIPT at a reduced price. I think it was £250?

I'm glad you're aware of the limitations of the tests. There have been posts on here from people who weren't told. We were told by ours too.

@Elouera in England the national screening committee set the standards about what tests must be offered and in what circumstances. Currently NIPT is not part of the requirements. If you have a combined test with a “high chance” result you would be offered an invasive test (CVS or amnio) depending on gestation. Some hospitals have decided to offer more than /wider options than are required & so offer NIPT.
I am a midwife specialising in this & happy to discuss your specific situation by PM if you wish. More info including about possible test provider options here www.stgeorges.nhs.uk/service/maternity-services/your-pregnancy/fetal-medicine-unit/the-safe-test/
In London area as far as I know the prices range from around £345-£500 for exactly the same test.
Hoping all goes well for you x

I'm in Warwickshire, we already had the NIPT done when the combined came back. We were offered CVS or Amnio. We did ask whether the NIPT would be offered for future pregnancies and were told no, as it's not diagnostic. We were referred to Birmingham and were told the same. We were told we could only go ahead with TMFR with a confirmed diagnosis from CVS or Amnio.

I was told if I got pregnant again not to bother with the GP and ring the Screening midwife straight away. Not bother with blood screening and go straight for CVS with scan at 11/12 weeks.

Paying privately for NIPT at around 10 weeks instead of combined screening would be a good option for you (if you can afford it). Still do 12 week scan but wouldn’t bother with the combined testing bloods. As you say, earlier result (which will most likely be reassuring) and will save a lot of faffing around. If you did get high risk combined screen you will likely then have a choice between CVS/amnio and NIPT (which may or may not be funded in your area). You do also have the option of going straight to CVS if you would like to - but that carries risks obviously. If you wanted to do that then your midwife should be able to refer you.

Good luck! Low chance of recurrence.