Down's syndrome screening

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Hi there

Had my 12 week scan today and declined the down's screening but wish I took it now! Did anyone else decline theirs? I just thought what is the point when it wouldn't make a difference to me as I certainly wouldn't for DS.

Why do you now wish you’d taken it? I don’t know if you can privately request another screening maybe? I didn’t decline myself - I do think it’s good to be able to find out as then parents are better able to research and prepare themselves before baby arrives.

They don’t just check for Downs. They check for 18 other trisomies too - some of which would result in a short pain ridden life for the baby. You can buy a private nuchal transparency scan before 14 weeks or a NIPT test.

I'm in Ireland & they don't routinely test here for it, I was advised due to my age to have it but I decided not to. I have wavered between glad I did decline to have more tests (400 euro over here) to wishing I did. I'm now glad I didn't, I spent that money on baby essentials. All my scans have being perfect and show a healthy baby so fingers crossed. As a midwife said to me 96 out of every 100 babies born are absolutely perfect & those screening programmes like harmony etc prey on women's worrying heads. If I got that test done I know I would just worry about something else.

I declined mine as wasn't going to have amniocentesis anyway and it is only a risk indicator so doesn't tell you for sure and could cause unnecessary worry. Would rather enjoy this exciting time of being able to tell everyone rather than have a risk factor hanging over me. I also thought if there is a problem it will probably be detected at 20wk scan which is still lots of time to get your head round it. I understand why people do though so completely each to their own.

@Teddybear45 That is the 20 week scan.

@becca3210 Yeah the midwife said it is just a risk factor anc doesn't say for sure. She also said it would get picked up on at the 20 week abnormality scan anyways.

@Teddybear45 The NIPT test is not available on the NHS in Scotland.

@Teddybear45 is correct. The combined test screens for T21 (Downs), T18 (Edwards) and T13 (Pataus). OP, each to their own regarding screening but you’ve received terrible guidance from your midwife if you’ve been lead to believe that you’re only declining screening for Down’s syndrome. If you’ve changed your mind you can get private NIPT testing which is a blood test. It’s also more accurate than the combined test.

Op you declined because you'd keep the baby. Presumably from what you've wrote nothing has changed regarding that.

When you have your 20 week scan they will pick up any physical anomolies which are more significant than a risk factor %

@SleepStandingUp Thanks. Xx

Oh sorry I misread - I also thought you’d had your 20 weeks scan. If you know you that it won’t make any difference to you keeping your baby then just wait until then.

@PuffHuffle5 So the 20 wk scan can also show up edwards / pautaus syndromes?

My dsis had a baby with Edwards, it showed upon on her 12 week scan.

I'm in Scotland too and I'm pretty sure they actually don't test for the other trisomies, I think it just is down syndrome.

You can get the Harmony test privately, that's what I did. It's not cheap though.

I've just checked and I'm right, there is no screening for Edwards and Patau syndrome in Scotland at present, so the OP is right.

The 20 week scan can only show Edwards / Patau if it results in specific facial / limb deformities. It’s not 100% accurate and depends on the experience of the sonographer

@mistermagpie No it is certainly not cheap! Where do u get ur info on what is screened in Scotland? Xx

But the mudwife had a good look and said from what she can see everything is normal. Xx

@Teddybear45 but as MisterMagpie has said in Scotland they don't screen for that. Where are you from?

In Scotland you only get down syndrome screening. It is not like England where you get screened for the other trisomes.

You I sometimes think more knowledge isn't always a great thing. Staff tried to make me feel bad for not having any screening then announced my baby looked like they had Edwards. Incredulity when I said no to an amniocentesis. Implication was there.

Baby born. Nothing wrong with him. I could have terminated or miscarried a healthy baby.

Even with the misguided mindset that knowing doesn't change anything, you should still know, some babies need a little extra help being carried/delivered /immediately afterwards and all the info that is collected during your pregnancy works toward this goal. Down Syndrome for example, some little ones need the extra attention to how their heart is coping/going to to cope. Why wouldn't you give the docs a full picture to work with? People splash the refusal around like a badge of honour, but it can be the difference between having all the info and having to guess should mother/child need help suddenly.

AFAIK you can still screen for downs at your 20 week scan but not Edwards and patous. Could be worth contacting your midwife and saying you've changed your mind. They might be able to fit you back in

@dolooah in Scotland they only screen for Down's Syndrome.

I declined the screening with all 4 of mine. It's only a likelihood, not a yes or no, so useless really, and wouldn't have made any difference to me anyway. I know someone who had a higher risk factor so opted (and later said she felt pressured by drs) to have an amnio. Amnio caused a miscarriage and the baby was perfectly healthy.