Not having a 12 week scan

[mommysharkdodo]

So I went for my scan on Friday not knowing how many weeks I was and found out I was 9+2. I now don't have another scan until I am 20 weeks! I asked if I would not need one at 12 weeks and she said no because I am not having the screening for downs.

I was in and out of my scan in 5 minutes she showed me the heart beating, took a few pictures and that was it! Didn't tell me if the baby is looking ok or anything. I didn't really want to tell everyone until I was 12 weeks so was hoping to have a scan picture that didn't just look like a white blob (which is what mine looks like at 9 weeks) will I have to pay for a private scan or should I be having one at 12 weeks?

Is there no other tests that should be done before 20 weeks?

The low accuracy put me off and the fact that my friend was told she had a high chance of having a disabled baby all the way through her pregnancy, nearly had a termination but couldn't go through with it as she had waited so long to fall pregnant she said she would love the baby no matter what (as would I) went through all the stress and worry through her pregnancy tests after tests worrying it could cause miscarriage, to then have a completely healthy baby at the end!

I wouldn't go through with anything that could put my baby at risk of miscarriage so the midwife said it would be a waste of time doing the screening.

The midwife gave you bad advice, op - as others have said, the screening tests for more than just downs and can pick stuff up which can help improve your care.

Edwards syndrome isn't always incompatible with life. I know it's anecdata but my ds went to preschool with a little girl who had Edward syndrome. She is now 12 and very much alive.

Sorry to derail, it's just my 5 year old has a condition that many people terminate for because of "poor quality of life" and I think that these kind of phrases are sometimes overused.

Just to say, it feels like the OP is getting a grilling on why she's opted out of the screening here. I appreciate that people are trying to help, but that wasn't the point of her post, and people do have good reasons for not having it - she shouldn't have to defend that position. (Fwiw, I declined it with two pregnancies, had it with the third, so have made both decisions, each time for reasons I believed, and still believe, to be sound).

Elliejjtiny not sure what your DS’s friend had but if they were 12 it wasn’t Edwards

Prognosis of Edward's Syndrome
The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

The 12 week scan is also used for dating and general check to make sure the baby is forming correctly at that stage. I didn't have the downs screening as I had the Harmony but I was still given the 12 week scan. I would fight that if it was me as I think it's important for your due date as it moves a lot before then. Best of luck x

There are other issues such as anencephally that can be picked up at the 12 week scan not at 9weeks. This seems very wrong to me.
I'm glad you can afford to go private xxx

She definitely had edwards syndrome. She was severely disabled and very hard work for her mum and dad but she was a very happy, smiley child.

Children with mosaic Edwards syndrome can live longer as they have some Normal cells alongside the cells with trisomy 18 but usually are severely disabled.

I’m 14 weeks and just had my baby diagnosed as triploidy. I’m 27 with 2 healthy girls so it’s a total shock.
I had a 9 weeks scan, all fine apart from my dates, I was 11 weeks, they pushed me back to 9 but that’s not uncommon.
We was also told at 12 week scan everything was fine (although we have suspicions they saw something but couldn’t sure sure so chose to stay quiet). It was my Down’s syndrome result that came back 1 in 4.
My trisomy 13&18 came back at 1 in 2500.
My baby does indeed have an extra copy of every chromosone, so the combined screening totally missed the duplicates of 13 and 18.
We had another scan at 13 weeks for the cvs which showed a major heart defect, a short nasal bone and higher than average NT. baby is also off the charts small.

None of this was picked up at 9 or 12 weeks on a standard scan.
This would all be picked up at 20 weeks on a standard scan. Knowing this now or at 20 weeks would not make a difference, to us or to our baby.
Even with all the scans and combined screening tests, only Down’s was ever suspected. The only was to ever tell is cvs or amino which carries a miscarriage risk, which is personal preference of what your limits are.
This is less in reply to the OP but to those thinking the 12 week combined screening is major important.
In the grand scheme of things, it doesn’t make much difference unless you live in a country with a low abortion limit. And no, if you find out you need to terminate or wait for ‘nature to take its course’ 4, 14 weeks or 24 weeks, the pains the same.

OP its nice to have the pictures though. I found with my previous two the 12 week scan pics better than the 20 weeks, so for the £40 go private and get lots and lots of lovely pictures if you wasn’t able to get them before.
Good luck xx

This is not the place to be questioning OP on why she decided not to have screening. Her decisions are her’s to make just as those who do have screening are free to make those decisions for themselves.

Given that the vast majority (around 94%) of pregnancies where Downs is detected are terminated it’s actually incredibly offensive to suggest that someone should have screening given the assumption would be that the pregnancy would then likely be terminated.

I didn’t have screening because I had no intentions of terminating a pregnancy should an anomaly have been detected. Neither were twelve week scans a thing when I was pregnant sixteen years ago. We had a scan at eighteen weeks and that was it.

The twelve week screening can pick up other issues - low Papp-a as someone above said and various other things. So it can potentially help you have a healthy pregnancy regardless of whether or not you’d terminate if downs was found.,

The twelve week testing is fairly accurate. The accuracy depends on your age.

There’s no increased risk of miscarriage with the regular twelve week screening - it’s just an ultrasound and bloods. The thing that can potentially increase risk is a follow up chorionic villus or amniocentesis test - but you could also have a NIPT test which looks at foetal dna in your blood and that has no extra risk.

I personally would have the screening - it’s absolutely up to you what you do with the results.

Edwards is compatible with life in some cases. The majority of children who have it unfortunately die before or just after birth. (Professional and personal experience alas.) I think the oldest survivor is/was 15 but that’s very rare indeed.

Without the combined test bloods I wouldn't be on the high risk pathway although I think I'm ok for MLU (if one is open...) if growth is ok. 3 extra growth scans, more monitoring generally- 2nd pregnancy so normally I'd have had some big gaps between appointments - Basically blood pressure/urine every 2 weeks from 30 weeks because pre-eclampsia is best picked up quickly... All because I had the screening test - probably not a bad thing!

I know that I would not have terminated (or risked amnio) for just downs syndrome but there are definitely some co-morbidities that would have had me and DH thinking seriously - so accessing more specialist scans etc had the NIPT gone the other way - and finding out about problems at birth, possibly in a rural MLU 50+ minutes from any kind of hospital would be less than ideal - better to know, if necessary have a planned CS or induction at a specialist hospital and give the child the best possible chance!

@stokiemum62 there is one girl in the UK living with Edwards. She's one of less than 10 children born and surviving with it in the world. I read about her about 2 years ago when she was 10. So sounds like she's the girl elliejjtiny knows. She's unlikely to make it to adulthood. But she is very very much a one off.

OP if they felt they accurately dated you at 9 weeks they will only offer another scan if you are opting for the testing as the nuchal fold is too small to measure at 9 weeks. Without having the nuchal measurement the scan just measures baby from rump to crown, which takes seconds. They do all other screening at the 20 week scan.

As a previous poster stated Edwards syndrome is no longer classed as incompatible with life, we have recently had training regarding changing how we phrase it as children have survived with the condition, mostly with the mosaic form.