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Pregnancy

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

Original poster

Down's syndrome screening

85 replies

Apple35 · 16/09/2019 18:46

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.

OP posts:
BeanBag7 · 16/09/2019 21:51

I declined screening for Downs but still had the screening to Edwards and Pataus.

If you would continue with the pregnancy regardless, then the screening is unnecessary.

ByTheShoresOfSilverLake · 16/09/2019 21:55

Even if you continued with the pregnancy you could have researched the condition and sought out support groups etc. It doesn't have to be so black and white as terminate or not.

Jaffacakebeast · 16/09/2019 21:57

Knowledge is wisdom

IckleWicklePumperNickle · 16/09/2019 21:57

I declined both times.

SleepingStandingUp · 16/09/2019 22:07

you should still know, some babies need a little extra help being carried/delivered /immediately afterwards
And op would have had scans where they will check any heart malformations, thryll check the brain, they'll check the limbs and the face. Those are the issues that need extra intervention, a 30% or whatever chance of X trisomy isn't an answer in itself and leads to pressure to have an amnio and abort certainly for t13 and t18

LittleDoveLove · 16/09/2019 22:08

I declined mine but only because I went for the Harmony (NIPT) which was more accurate. I had to pay though.

McHelenz · 16/09/2019 22:11

I refused down testing but accepted testing for Edwards and Patau. Mainly because with Downs i wouldn't of terminated but the other two I'd of had to really think.

mistermagpie · 16/09/2019 22:19

As the OP has said (and so have I), screening for Edwards and Patau syndromes is not available in the NHS in Scotland.

They might pick up related issues or characteristics at the 20 week scan though, but they might not.

I personally did want to know so I had the harmony test, mine was covered under health insurance I have but it costs £400 otherwise. Even the Dr who performed it said the ethics of the situation bother her - basically richer people can get screened for things that poorer people can't. It would be different if the other two trisomies were included in the NHS screen obviously. I'm not sure why they are not, but based on what I've read on here (and my own three pregnancies) Scotland's ante natal care is quite poor compared to other places.

pumkinspicetime · 16/09/2019 22:20

I declined screening because at the time with twins it seemed too risky to have anmio and I wouldn't have terminated the pregnancy.
Medical staff never raised it as an issue.

SleepingStandingUp · 16/09/2019 22:22

@mistermagpie it's still quite new I nEngland tbf, I had my screening with DS in late 2014/ early 2015 and it was just Downs Syndrome. DS is had screening in early 2017 and it was for all three. DS has mosaic trisomy t18 so actually glad they didn't screen for Edwards

Original poster
Apple35 · 16/09/2019 22:23

I unfortunately don't have £400 to spare! I'm a poor nurse! Who works for the NHS too!

OP posts:
mistermagpie · 16/09/2019 22:26

Most people don't have £400 to spare, it's a pity because it's a really simple test (for the patient).

If I was you (and this is what I did in my previous two pregnancies), I would wait and see what the 20 week scan brings. they do check the structures of the body carefully and can identify problems that might have been missed in the screening anyway.

Original poster
Apple35 · 16/09/2019 22:30

Thank you. I will maybe phone my community midwife tomoro and discusd this all with her along with my options 😀

OP posts:
Moomin8 · 16/09/2019 22:32

I'm 39, currently pregnant with #4 and I've declined screening in all my pregnancies including this one. Simply because I would not be able to terminate wherever the results.

PrayingandHoping · 16/09/2019 22:37

@SleepingStandingUp if your baby is at risk of downs you get extra scans that are more detailed than the 20 weeks scan. You can get the all clear from the 20 week scan for example of the heart, but when scanned by a fetal heart specialist it is a lot more detailed and they can pick up issues a sonographer wouldnt at 20 weeks. Later in the pregnancy (around 32 weeks) they will also check the stomach for issues common in downs. Both these issues help the baby get the best care at birth

You tend to also be induced early rather than go full term.

SleepingStandingUp · 16/09/2019 22:43

@PrayingandHoping I'd be interested to know how many babies with a clear 20 week scan went on to be born with a heart condition that could have been picked up with more detailed scanning AND had a chromosomal abnormality thst would have triggered those extra scans.

Don't get me wrong, I know the 20 week scan isn't perfect, thry missed my sins CDH at 20, 28, 30, 32 and 34 week scans (growth scans as he was measuring large) which would have prepared us for him coming out prem and blue (he's 4 now)

Wearywithteens · 16/09/2019 22:43

This reply has been withdrawn

This has been withdrawn at the poster's request.

Wakeupalready · 16/09/2019 22:45

I was not sent to the 12 week test for chromosomal abnormalities due to a shit GP, and living in very rural Australia.
The GP's opinion was that everything seemed fine and the sickness I was experiencing and thought was unusual was normal. First baby was okay , therefore so should the second one was his logic.
Except it wasn't. And we didn't find out the baby had Edwards Syndrome till 19 weeks with an ultrasound scan, followed by a mad rush for amnio (that wasn't available in our area) in a city 10 hours drive away.
The results were heartbreaking, and to continue with the pregnancy I would've had to move away from DH and our home for it's duration , as I was at risk, and for whatever time the child would've survived for, as no hospitals near me had the facilities to care for the baby should it have survived till birth and after.

For many reasons, including our isolated location, our first child, what the ultrasounds ( 4 of them) showed and what we knew we could deal with - we chose to terminate at 22 weeks. It was awful, and worse- could have been avoided if we had had the earlier screening done.

Essentially, if you know you would be able to cope whatever the outcome - wait and see.
If not, get the screening done. There's a world of difference between at termination at 13-14 weeks, and one at 22 weeks.

It's most likely everything will be fine, but if it's nagging at you I'd do it.

Roozy123 · 16/09/2019 22:47

The combined test screens for T21 (Downs), T18 (Edwards) and T13 (Pataus).

This is correct for a 12 week scan as I had mine last week and already had the results back!
They check the scan and also take bloods to check and you are sent the results mine came back as low risk and then it states other bits about percentage of the baby having these things at your age and just in general etc.

I do think women should have it just to be prepared, support, extra care for the baby etc.

I don't really know what happens if you change your mind after if you can just have the bloods done!? I'm not sure.

FairyDust92 · 16/09/2019 22:48

I think if you regret not having it done phone and ask to have it done.
I had it done wouldn't have changed anything for me. However i would want as much time to get my head around it/research it as much as possible but each to their own x

Original poster
Apple35 · 16/09/2019 22:50

@PrayingandHoping but would they offer those extra tests in Scotland? Where are u based?

OP posts:
Original poster
Apple35 · 16/09/2019 22:52

@Wakeupalready Sorry to hear of your loss. Here in Scotland they don't screen for Edwards on the NHS. xx

OP posts:
june2007 · 16/09/2019 22:54

I refused with both mine. My sister has a child with dS, but they also said a whole load of other thins that were were apparently incompatible with life that the child might have. Well he doesn't. And some people may have aborted based on that. The screening doesn't tell us everything.

Autumn2019 · 16/09/2019 23:56

I think women should have it just to be prepared and to know where and how to get extra support and care for the baby if required. As PPs have already said, it also gives medical professionals more information to work with.

I live in England and at my 12 week scan the sonographer was unable to do the nuchal translucency measurement due to the way baby had positioned itself. After about 30 minutes of walking around and tea drinking (at sonographers advice) tried to take measurements again but still couldn't. Baby had hardly budged (if at all). They did not offer me another scan but instead told me come back at 14 weeks and did a blood test which would give me a risk factor for DS,SP and Edwards. A few days later they called me while i was at work and told me that based on their results i have a 1 in 7 chance of having a child with DS. It broke my heart to find out that my much longed for baby could be poorly. They offered me an amnio which i think had a 1% chance of miscarriage, and i did not accept as i did not want to risk losing my baby. I finally booked myself for a harmony test (i am not rich but was able to afford it) and got the all clear, and it is said to be 99% accurate. That was good enough for me. To me, though very expensive, that money was well spent just for the peace of mind during my pregnancy. It was one less worry for me. The harmoney test turned out to be correct. My baby was fine. I think ignorance is bliss (for as long as you can remain ignorant on any given matter), but knowledge is power.

I wish you a happy and healthy pregnancy

meccacos2 · 17/09/2019 06:33

I paid for it privately (it’s a blood test and cost me $800), because of that they didn’t screen for downs at the scan. They did perform the measurements though and I checked myself that the risk factor was low.

The blood test screened for other genetic abnormalities and told me the sex. You can still pay for the blood test. It’s more reliable than the scan anyway.

20 week scan confirmed the baby had all their organs and a healthy heart.