Screening at 12wk scan - what did you do and why?

[Mimba1]

Interested in people's choices and why they made them and whether they would do the same thing again.

I hope to be an older first time mum (nearly 37) so I know my risk is higher and have had 2 MC this year after 3 years TTC. It's been a long journey. DH thinks it's a no-brainer and we should have the screening. I'm wondering whether to - I'm not sure I would choose to have amnio if it came back high risk given the risk of MC from the procedure (one of my MC was after seeing a heartbeat at 8 weeks - I've been on the wrong side of 1% odds before...) And if I'm not going to follow it up what's the point of having the scan and possible worry? Obviously it could come back fine... am I overthinking this? I'm still worried I'll MC before then as well and the whole thing will be irrelevant (2 or 3 weeks to go)! I am a crazy lady!

I chose not to have any additional tests at all, other than those routinely offered. As it turned out, dd was born with something that could not have been identified through antenatal testing. If I were to have had a second child, I would have declined additional testing again.

I didn't have the screening for Downs Syndrome during my first pregnancy. It wouldn't have made any difference to whether I had continued with the pregnancy, and would have just caused unnecessary stress.

If I'm able to have any more pregnancies (I've just had an ectopic so I realise this will massively impact my future fertility) then I probably will have screening. I'm slightly older now, and have the impact on my first child to consider too. I don't mean I'd necessarily terminate an affected pregnancy - but I'd want to be more prepared.

We paid privately for NIPT at 10 weeks so didn’t have the NHS texting as it was superfluous. I was almost 41.

I’d pay for NIPT again without a doubt. Wouldn’t you do that?

I chose not to get the screening tests for downs etc. I decided that if the risk did come back high, I didnt think it would affect my choice to continue with the pregnancy, and it would just result in months of stress, that may be all for nothing. Plus my babe measured too big for the scan test by the time I had the 12 week scan which I took as a sign i was making the right decision.

I chose to have the screening. We didn’t care if it came back with a high chance of Downs but we opted for it as we wanted to know about the risk of Edwards or Patau’s given that they are “incompatible with life”

I've had the combined test (NHS) with both pregnancies - age 35 & 38 at the time, both low risk. I would terminate for Edwards & Patau and I'm not sure about DS but I would have rather have been prepared than not.

Thanks everyone that's helpful. I still have a bit of time to think.

@megan2018 I was thinking about doing NIPT. Can you just get it for Edwards'/Pateau's/Down's? I know a negative result is supposed to be more than 99% accurate for those which is great, but it's a lot less accurate for other conditions. At the end of the day it is still screening not a diagnostic test and I read that up to 50% or 60% of "positive" results for Edwards' and Pateau's are false positives which is a worrying stat! I think it would still help to reassure me though if it came back OK. Think they even started offering on the NHS in Wales. I might do some research on what's available locally.

Thanks @Disappointedkoala I probably will get the combined test. I would also rather be prepared. If there was a way to know for sure about those conditions without having a further test that has a risk of MC I would go for it without question. My dilemma is what to do if it comes back high risk. I'm not sure I would go ahead with the diagnostic test knowing there is a MC risk, even a small one. And if I'm not prepared to follow up then what's the point?

We had private NIPT test at 10 weeks, which we had discussed with midwife during booking appointment. She told us we might as well do the combined test as well at NHS 12 weeks as that one also included Papp-a. To be honest we also weren't sure what we'd do if it came back high risk (luckily results were low) but we wanted to know and figured we'd cross that bridge IF it came to it.

I am a control freak. I would have worried just as much with a low risk, but as I was an older Mum I knew my risk would be relatively higher. I didn't see the point of being given a risk score and went straight to diagnostic testing.

We didn't have the test because we knew that even if it came back as 'high risk', we wouldn't have had the amino test because of the risk it comes with and that even if baby did have one of the conditions, we wouldn't have chosen to end the pregnancy. If it came back as high risk then we'd have spent the next 6 months worrying, but also if it came back as low risk then there's no guarantee that we wouldn't be that 1 in 10,000 etc. However at the time we didn't know about the NIPT test. If we choose to have testing in the future, we would definitely do the NIPT test as well. Even if it doesnt change your decision to carry on the pregnancy, it could be useful to be prepared.

I think you are jumping ahead more than overthinking it. Amnios are rare, even at 37.

I went for the screening so I was knowledgeable about the situation. I personally would never have an abortion, but I wanted to know if there was a condition that I have to deal with. Obviously it doesnt cover everything but, for example with downs, I would have wanted to know if my child had it, just so I could get over the shock before she was born.

Everyone gets the screening for their own reasons. Yoh just make your own personal decisions as you go along.

It’s not just testing for Down’s syndrome though, there are other genetic issues that can show, they only offer further testing if your initial scan shows an issue.

I didn't because I wouldn't have terminated for downs and would have likely carried a baby with Edwards/patau to term. Now I've got 2 other children to consider and I'm older, if I had a third I might go for the NIPT because although I'd still continue with Downs, my decision would probably be different for Edwards etc because it wouldn't be fair on their siblings.

I had all the screening tests - NIPT and combined screening. I wanted to be as informed as possible. It might not have affected my decision re the pregnancy (depending what it was) but would have meant DH and I could discuss and prepare while we weren’t also dealing with a newborn.

I've ve had the normal screening tests offered each time. My second pregnancy the scan showed a high nuchal measurement. We eventually had an amnio and our baby had a very rare chromosomal problem and so we had a termination.
This pregnancy I toyed with having an amnio again but we decided if the nuchal was fine we would leave it.

There is such a massive scale of what can be wrong if there is an issue (which is generally rare) that I couldn't ever risk not having any screening.

Should say as well I was 25 for my first pregnancy, 28 for my second and now am 30 for my 3rd.

@Thegirlhasnoname

I chose to have the screening. We didn’t care if it came back with a high chance of Downs but we opted for it as we wanted to know about the risk of Edwards or Patau’s given that they are “incompatible with life”

These were 100% my thoughts too and the reason why I chose to get the tests

I had the initial screening but wouldn’t have had an further tests due to the risks. If my screening had come back positive it wouldn’t have made any difference to my pregnancy, it would have just meant we could research and be prepared to care for a baby with additional needs.

oneandabean that's not really the way it works. A lot of the issues found are incompatible with life.

@Treaclepie19 for Edwards/patau yes I was on about downs but thanks for the input 😊

I chose to have the tests, I'm a planner and a researcher by nature I would want to know if there was an increased risk of additional needs so I could look into what support would be needed and where it can be sought without the demands of having a newborn. I would also want to know if there was anything that would be incompatible with to life and how I would want to handle that.

I'm due a scan and will be having tests, not so to end it if they're not favourable but to be as prepared as I can be to give my child the best start.

Yes I had all the screening tests available at 12 week scan. I wouldnt continue with Edwards or Patau. I would with DS but I absolutely would want the time to preapare. I dont know anything about it so would want those months to research, get plans in place.

Having an unknown DS baby at birth would shock me and I would feel so so unprepared. I am a massive planner though and like advance plans in place for everything.

I chose not to have the screening as, at the time, I did not want to have an amnio due to the risks, and thought that, if I was high risk, knowing there was a higher risk throughout the pregnancy would cause unnecessary stress. I hadn’t realised that even if you decline screening you are still referred to fetal medicine if the baby has a high NT measurement at 12 weeks. In the end I did have an amnio as I could not cope with being in limbo and the stress that it would cause, and I was also advised that the results of the amnio would assist the specialists in any treatment the baby may need. Unfortunately we received a diagnosis of patau syndrome. In a future pregnancy I would opt to have the testing as I would find it difficult to relax if I didn’t given what we have been through.