To have a termination based on a nipt result

[Fliss89]

We had a nipt test a couple of weeks ago and it came back high risk, to cut a long story short we went for a cvs yesterday and they couldn't do it, have to go back again next week when I'll be 14 weeks.

Failing next week I have to then have an amino at 15 weeks. My issue is... I asked the consultant how accurate the nipt was and she said it had a 0.01% false positive rate.
Mentally still being pregnant knowing the outcome is pure torture waiting around for all these tests when it's highly likely the baby does have the condition. I'm torn what to do?
If I have a termination prior to a diagnostic it has to go down as a section C "social termination" over a section E for fetal anomaly. This means I won't get any extra support if I get pregnant again, it's also very upsetting to me that will be on my records when this is a wanted baby.

i dont mean for this to come across harsh in any way.

However if this is a very wanted baby, then id keep the pregnancy going until you know for a fact that you will have to TFMR, which is an option they will give you surely.

i know my midwife had told me i would have the option to terminate if the nipt test come back high risk and everything was correct even after the amniocentesis diagnostics come back.

its not going to make a different on how you deliver this baby if you was to terminate i dont think. so is it just worth waiting and holding on to some kind of hope that your baby will have some sort of quality of life before making such a huge decision, i know its hard and its stressful waiting but is it worth waiting for? to also get that support going forward?

I had a termination last year. It took them two weeks to schedule it because it was surgical. Could you schedule it with the hospital and then not need to worry about the cvs or amnio results?

For me, scheduling it made me feel like I had some control in a very sad situation

If I wanted the pregnancy, I would wait for the further tests and results.

My NIPT was a false positive. They happen. There's a subreddit about NIPT with lots of useful links and information. (My false positive was for trisomy 21 and I'm rather old, so the odds weren't great. But there were no ultrasound markers and I'd done the test privately before the nuchal scan. Your circumstances may be very different).

I also couldn't have the cvs at the first attempt, I'm really really sorry. Sometimes bad luck just piles on. I'm hoping for the best for you.

False positive happen all the time with NIPT - it would be disastrous to rely solely on that test

What do you mean by extra support? Does the support defer if you’ve had a abortion in the past?

What condition is your NIPT result suggesting? NIPT is better at identifying Down syndrome than Edward or Patau.

It is however a screening test and I would always suggest waiting for the CVS or amnio result before considering TOP.

It’s really difficult OP and I’m so sorry you find yourself here. It’s almost impossible to ask others as everyone has a different take. You can find outcomes either way. Personally I would TFMR, but it is a deeply personal and upsetting decision either way. I have seen the devastating consequences of a “clear” amnio when the nuchal test had indicated a major problem. Big handhold for you whatever you decide.

Wait for further tests. There was a thread of here a while back where it was a false positive for Edwards/Pataus.

Personally I would wait for the definitive decision. Otherwise I think that the “what if” would torture me forever.

I have been in touch with bpas and had a consultation which has made me feel slightly more in control, thank you.

For us termination wouldn't have been an option because all our babies are very much loved the Twins came back positive for things wrong and yet were born healthy and are now 2 very healthy toddlers. One of our oldest children we were told had downs and we prepared ourselves to find all he had was a club foot and after surgery all was fixed

An article you might find helpful OP x

I terminated based on my NIPT, my doctor made it quite clear that it was extremely unlikely to be a false positive and I was in such a horror show of a limbo that I chose not to wait any longer. I had a surgical termination and have no idea what my records say. I was offered counselling and everyone at the hospital treated me with a lot of care.

@sturdyartichoke this gives me a bit of hope, also t21 and no soft markers on the scan however I understand scans don't always show anything for t21. It's just hard to keep the faith when you get told 0.01% chance of being a false positive.

@giadaros I'm sorry you went through this too, the limbo is almost unbearable. Thanks for the link

I would wait for the CVS, it’s best to have a definitive answer as even then you will probably second guess yourself.

I know how hard it is, we had to wait six weeks for our CVS results and then had a further week of appointments and scans. In the end I was over 20 weeks by the time we had a TFMR and I delivered him. It was hell and I still carry guilt over certain things but I can I imagine how much worse that would be if we hadn’t been as sure as possible in the circumstances that he was too poorly to survive/have any quality of life.

The hospital will treat you kindly and with respect no matter what you decide but just so you’re aware in my next pregnancy I was treated as high risk and under the care of fetal medicine. You might also want to consider that if you wait for the CVS and the results are something genetic that means that yourself or your partner are a carrier they can refer you to genetic counselling to have further tests to see if that’s the case.

Have you talked to ARC? They are a charity that is really helpful to talk with

All these babies are very much loved. You may not realise how hurtful your comment is

ARC is amazing. Been there, it’s hell and I’m so sorry you’re in this horrible limbo. I was there myself and was almost relieved when the CVS came back bad. The advice of a pp to book in with BPAS but try again with invasive testing is not bad advice. You can always cancel or reschedule surgery. We ended up down to the wire as well. The entire experience was a living nightmare I’m so sorry 💐

You’d be doing a slightly erratic thing to terminate based on NIPT. False positives do happen quite a bit. It isn’t a diagnostic test at all.

Did you ask where the 0.01% figure is coming from? In my experience, a lot of healthcare professionals do not understand the statistics around the "99.9%" figures that are advertised by NIPT providers. But I did not meet anyone who was not adamant that NIPT is not a diagnostic test and should be followed up by a diagnostic test, and I thought that's what their guidelines say too. Their advice would probably have been different if there were obvious scan anomalies.

What was the NIPT result? Usually it gives odds like 1/10,000 or 1/150 or 1/2. None of which are certain results.

It is a screen not a diagnosis. 0.01% isn't a statistic I've seen in any NHS literature, so I'd be question where that was evidenced (and who paid for the research).