Down's syndrome screening

[Apple35]

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.

Once you miss the narrow window to screen for downs on the ultrasound you can’t go back and ask them to check.

You can only pay for the harmony test which is more reliable.

I have no idea of numbers of those clear at 20 weeks but go on to have issues with more detailed and or later scans.

I am England OP. You only get the extra scans of anything shows baby is at risk (or has if you've had the amino) if DS. They are not routine

@PrayingandHoping Spoke to midwife who advised the extra screening for the down's syndrome is the amino etc..

Yes amnio confirms it. But if any test you have indicates a risk (whether you choose to confirm with amnio or not) then they treat you as if your baby does have DS and you then have extra scans etc to see what support baby may need straight after birth.
You would need the have the test at 12 weeks or the NIPT though to indicate risk (or an amnio but it's not essential) You don't get the extra scans unless something indicates downs, but you don't have to have had it confirmed with an amnio.

I know all this through personal experience.

The extra screening for downs after 12 weeks is either NIPT, or amnio. But you don't have to have the amnio. If you choose not to and are higher risk you will then just get all the extra scans as if is assumed baby has DS

But is that the same for Scotland?

I'm not sure what you're asking really. I'm certain if there was any signs that your baby had Down syndrome they would do the extra checks to see if baby had any of the serious issues associated with it which need acting on at birth.

But you would need some screening first

My friend had the screening, came back as a risk of 1:10,000. 20 week scan was perfect. Her baby had Downs Syndrome.

It won’t necessarily get picked up on routine screening.

They couldnt do it for me because I had twins.

I have no idea if it’s offered in Scotland but in England mothers who miss the window for nuchal fold measurement and therefore miss the combined test can be offered the quadruple blood screening test, which screens for Downs (albeit slightly less reliably than combined nuchal measurement + bloods).

I am astounded that a HCP would recommend amniocentesis to a woman with no other risk factors for chromosomal abnormalities and no prior screening at all.

I can only get a blood test for Down's in Scotland and not the other two.

Blood test is always the first screening for downs. Usually at 12 weeks. Those high risk can then pay (depending on area) for an NIPT if they want it or an Amnio (not a blood test)

The extra scans I mentioned are only for those high risk.

Op did your 12 week scan go OK?

Yes you can pay for a blood test if you're really anxious but it sounds like it's just pregnancy nerves.

You wouldn't have an abortion so I'd say wait for the 20 week scan, if there's nothing showing up on the anomoly scan then that should mean there's no congenital defects. That is the bit that matters because that's the only bit they can fix.

@SleepingStandingUp Thank you for ur reassuring words. I might have the blood test they offer for over 14 weeks but will discuss further with my midwife.
Yes my 12 week scan went fine and told everything looks normal xxx

Do whatever keeps you most sane through this process, and good luck xx

@SleepingStandingUp Spoke to my midwife today and going to see the doctor about my anxiety levels.

Sounds iek a good idea. Some level of pregnancy anxiety is normal because we're trying to grow a complex organism from two microscopic gametes but you do sound like you could do with a bit of support and someoen to talk to. Mention it to your midwife too

Got the doctor at 2pm. Plus it is a really good doctor that i like which is always a bonus. Midwife in clinic this morning but phoning me in the afternoon. I too think there is a lot more going on!

Good call Apple x

The whole “I want to be forewarned even though I would never terminate” is completely untrue. Yes, people say they wouldn’t terminate, however evidence shows otherwise in that 94% of pregnancies where downs is detected are terminated.

It’s entirely a personal decision, but people need to be honest when in truth most people would terminate a pregnancy for Downs.

I don’t believe that you need to be aware if there is an issue. There are plenty of serious and severe disabilities which cannot be screened for and which don’t become apparent until after birth.

For me I had no intentions of terminating any pregnancy, my only exception would be for anencephaly where there is essentially no brain. But that would be picked up on the routine scan. I didn’t have any screening and it turns out I may have in fact passed a genetic condition to my DS which even I didn’t know I had until he was a teenager. Had I known pre birth I would still have continued with the pregnancy without a doubt. However it’s also worth bearing in mind that if an anomaly is detected there is very much an expectation from the medical profession and even from friends and family that you should terminate. Ml

The whole “I want to be forewarned even though I would never terminate” is completely untrue
No it isn't. DS had mosaic trisomy 12 and 18 (trisomy 18 is Edwards). We would NOT have aborted for Edwards or Patau let alone Downes. However I know what it is likely to mean if we get a diagnosis like that and we'd prepare DS differently that for what I'm hoping are two healthy babies than if we expected a prolonged hospital staff, poorly babies etc. We were only in for 12 weeks with DS but it was 18 months in and out. I'd want to be prepared for that, organise a rota for school runs etc.

So yes, most families want to or are counselled into abortion for DS, let's aline the other two, but it's utter nonsense to say people wanting to be prepared is a lie.

The whole “I want to be forewarned even though I would never terminate” is completely untrue.

How can you possibly know that of OP?

"The whole “I want to be forewarned even though I would never terminate” is completely untrue."

Not true.... may be for some but not all. And setting medical staff be able to help your baby as soon as it's born and set yourself up mentally for any immediate medical intervention/operations is helpful. Stressful yes but personally I think better be prepared before birth than a shock after and risk to baby's health.

*has. He still has wonky chromsomes 😂

A Facebook friend posted this yesterday, maybe of interest:

meandthelittlefire.com/2019/09/13/to-screen-or-not-to-screen/?fbclid=IwAR3-Z6zVSIErFTEn8V0UsqMeLjpfW7aXXKiFNfkScN96Qg5Zci638IYuiac