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Pregnancy

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

Original poster

Did anyone opt out of the first trimester screening tests? (Downs, Edwards etc)

47 replies

heybabes · 10/05/2021 15:04

I had my booking appointment last week (I'm around 10 weeks pregnant) and decided that I would opt out of the screening tests usually given at the 12 week scan for Downs, Edwards and Patau syndromes.

The midwife indicated that some people opt in, some don't. I suffer from a lot of anxiety so I thought I would worry unnecessarily whatever the results were so thought I would opt out. The midwife said I was the lowest risk you could get anyway - I'm 29 and have no health concerns (that I know of).

Since I've made that decision though I'm now worried that I should have had them anyway and am I just being stupid by not? I'm still having a scan at 12 weeks just not the blood tests. Has anyone else chosen to do the same or am I being crazy?

OP posts:
JumperooSue · 10/05/2021 22:22

Many people opt out as the result would have no impact on their pregnancy.

Just to put it out there so you are making an informed choice. What your midwife said isn’t strictly true, it’s impossible to know anyone is the lowest risk possible without undertaking the test, yes you’re young but other than that your health has no real impact on your screening results. The measurement of fluid (NT) from the baby’s neck and the result on the blood test are the main contributing factors to a high risk result. Age is merely a background risk and young, healthy women do have children with Down syndrome, Edwards and Patua’s. I don’t mean that to sound negative it’s just to ensure you’re making an informed decision🙂 Also keep in mind that as you’re still having the scan at 12 weeks, if the sonographer see’s a raised NT measurement, they are legally obliged to tell you and document this, women who don’t want to screening should be offered a scan in the second trimester where the NT will no longer be visible🙂

ChocOrange1 · 10/05/2021 22:22

I had screening for Edwards and Pataus as they are so severe and most babies will die before the age of 1. I don't know if I would have terminated if they were found to have these conditions, but I would have liked to know in advance to prepare myself either way.

We didn't have the screening for Downs syndrome as I know people with Downs syndrome can have very full lives and good life expectancies, so its very different. I would not have terminated a pregnancy if the baby was found to have Downs syndrome so there didn't seem to be any need to me to find out.

That said, I was only 24 and may have felt differently if i was older or had risk factors.

MySocalledLoaf · 10/05/2021 22:28

I thought I would keep the baby anyway I would definitely have had screening to have the right care available at birth if any conditions did show up.

Megan2018 · 10/05/2021 22:33

I had private NIPT at 10 weeks as it’s more accurate and opted out of the NHS screening.
But I would never have not had any screening. I wouldn’t personally continue with a pregnancy incompatible with life.

thelightishere · 10/05/2021 22:48

@ForkedIt

I have had it in both of my pregnancies. Number 1 I had it ‘just because’ and came back as high risk for DS. We did no further testing but it was useful to have it in the back of our minds as a possibility. I’ve had the screening in this pregnancy again and I’m not officially high risk, but I’m not as low risk as others (1in 250). I do have low Papp-a this time though, for which I’ve been prescribed aspirin. Wouldn’t have known if I hadn’t had the screening. I like to know facts and figures so I like to have the screening but some people would prefer
May I ask if your high risk result was right?
Sleepplease1111 · 10/05/2021 22:50

@ChocOrange1

I had screening for Edwards and Pataus as they are so severe and most babies will die before the age of 1. I don't know if I would have terminated if they were found to have these conditions, but I would have liked to know in advance to prepare myself either way.

We didn't have the screening for Downs syndrome as I know people with Downs syndrome can have very full lives and good life expectancies, so its very different. I would not have terminated a pregnancy if the baby was found to have Downs syndrome so there didn't seem to be any need to me to find out.

That said, I was only 24 and may have felt differently if i was older or had risk factors.

Same.
EssentialHummus · 10/05/2021 22:56

I had the combined screening as I would terminate for Edward's/Patau's.

Dyrne · 10/05/2021 23:01

OP it sounds like you’re going to worry either way; I think you should talk to your midwife about your anxiety as this doesn’t sound like something that’s going to go away by choosing to take additional tests or not.

NinaMimi · 10/05/2021 23:32

I guess people’s thought processes work differently as to me not knowing would bring more worry and make me think about it more.

I remember being so nervous at the 12 week scan but when they said the measurements looked good and then I got the test results back which showed low risks I never felt so nervous at a scan again. So for me it was reassuring.

Also I think while the chances are low wouldn’t you want to know to make a decision on whether to continue with the pregnancy? You never said whether you’d continue regardless like a lot of the posters have who opted not to have blood tests.

Obviously very personal decision but I think I would have terminated if there was a high chance of patau or edwards as many of those children die very young and that would have been too much for me. So for me i took the test.

Ollinica · 11/05/2021 02:18

This reply has been deleted

Message deleted

ForkedIt · 11/05/2021 07:04

@thelightishere baby number 1 (‘high risk’) didn’t have ds and number 2 (‘low risk’) is still in utero so yet to find out! Grin

CupoTeap · 11/05/2021 07:12

Glad you've made a choice you are comfortable with op, very few people give consideration to the tests and the implications of the results.

stuckinarutatwork · 11/05/2021 07:12

I opted out. I was your age with my first pregnancy and had decided that whatever the results, we'd still go ahead with the pregnancy so it seemed pointless to have the extra worry about the tests. Likewise, the relief is also pointless to a degree... even if you're given a risk of 1 in 100,000, somebody has to be that '1'.

I'd probably feel differently now though (in my early 40s and with other kids to worry about).

Roselilly36 · 11/05/2021 07:42

My friend opted out with her second pregnancy, her DS with born with downs, she said she did not have the tests as she would have had him regardless.

YorkshireMamma83 · 11/05/2021 13:30

I am 37 so decided to go ahead and have the Combined Screening. The NT measurement and HCG results were fine, however my PAPP A levels are slightly on the low side, and therefore my results came in slightly higher risk. I have had a NIPT Iona test, and I am not going to lie the waiting for the result is making me very anxious. But for me, I would like to know all the facts of my pregnancy. Although I understand why many choose not to have the test.

I too have been told to take aspirin due to the PAPP A and will be given extra scans to monitor the growth later on in my pregnancy.

PlanDeRaccordement · 11/05/2021 13:35

I opted out, but this was over 15yrs ago now and at the time, the blood tests had a high false positive rate and then you went on to have an amniocentesis which had risk of miscarriage. I was also under age 30 and DH under age 40 so low risk to begin with. I think the tests are more accurate now and no longer as invasive? So what I did isn’t really entirely comparable to today.

YorkshireMamma83 · 11/05/2021 16:20

Yes the nipt is non invasive and 99% accurate but it's not yet available free on the nhs in most areas. I think the diagnostic test is still the only 100% certain test but still comes with the small risk of miscarriage.

Metallicalover · 11/05/2021 16:25

Yes I opted out of the testing. No matter what the blood results came out at I wouldn't have any further investigations and would never terminate. Therefore didn't get any testing done. Very personal choice! My sister and sister in law felt the same and didn't get the testing.

Choosehappy · 11/05/2021 22:48

I opted in because I am considered high risk and I am just always in a panic anyway about every little ache or pain so I have just said yes to everything they have offered. My partner and midwife is helping me a lot with my anxiety.

Doublechins · 11/05/2021 22:53

I haven't had it with any of mine. It would make no difference to me carrying on with the pregnancy and I was given birth in a hospital well equipped to deal with a baby with additional needs.

Mhc19 · 12/05/2021 11:22

We opted out because a high risk result wouldn't have changed our mind about the pregnancy and only would have caused more anxiety. However, if you can afford it, you can do a NIPT test privately if you get a high risk result from the initial screening. That's what we'll be doing if we have any more children. Initial screening and if it's high risk then the private NIPT test.

nothanksbarb · 13/05/2021 07:36

We opted out with DD as it felt 'invasive' (can't think of a better word) at an extremely anxious time and also any results would have just made me more anxious. I also had a severe phobia of blood and having bloods taken due to extremely deep veins and it always being a total palaver. I was reassured that the sonographer would be able to see on the scan if there was something to be concerned about in terms of measurements and would flag it up anyway.

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