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Original poster

Downs screening. Can anyone help me?

38 replies

Redrosebelle · 21/05/2018 20:01

Hi everyone. I’m on my second pregnancy. The first time round my downs risk came back as 1 in 16,000. This time it’s come back as 1 in 930 which I know is still low risk, but no one (midwife included) can explain why my risk was so much lower first time round. I’m 30, the nuchal measurement was 2mm and I had my bloods done at 12 plus 2. I don’t know whether to be worried. I know I’m still low risk but why are my results so different? The only difference with this pregnancy is that I’m much much more nauseous. Thanks in advance!

OP posts:
Isittimeforbed · 21/05/2018 20:05

The calculation is based on the nuchal fold measurement and the level of bHCG and Papp-A in your blood plus age. So if you're older with a slightly thicker nuchal fold (although could still be within normal limits) and blood results further out from 1 MOM then your risk will be higher.

Original poster
Redrosebelle · 21/05/2018 20:09

I’m just a little confused because my friend had a same nuchal measurement and is 34 and her risk was one in 10,000. If my blood results are higher does this mean I am more likely having a baby with downs?

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Isittimeforbed · 21/05/2018 20:13

The blood results could be higher or lower, just further away from the average than your friends tests. If your result is 1:930 and hers is 1:10 000 then yes, your baby is statistically more likely to have Down's syndrome. But this is only a screening test, so either yours or hers could have Down's syndrome but most likely neither does.

robotcartrainhat · 21/05/2018 20:19

my second came back as 1:350 or something whereas my first came back as 1:100,00.....
I was really worried by the difference considering it is same father and only a couple of years in between.

Had the blood tests done privately and the baby basically does not have downs.

I really dont know where the NHS get these numbers from and why they dont just use the more accurate screening?

I had to pay hundreds of pounds just for the reassurance of accurate results.

NHS Downs screening is notoriously unreliable and I would not actually worry about it unless it was higher than 1:100

when I went for the private testing they asked why I was having it done when my result was low risk.... they said that 1:350 was low risk and that many women got that result for second babies with the NHS test and were worried without reason to be

Carboholic · 21/05/2018 20:21

If you're really worried and you can afford it, would you consider Harmony?

GlitteryFluff · 21/05/2018 20:30

That's still a super low chance!

babydreamer1 · 21/05/2018 20:33

Get a Panorama test done as this will test the chromosomes and put your mind at ease. You can also find out what your having early on. Hope all is ok.

Original poster
Redrosebelle · 21/05/2018 20:40

Thank you so much for all the replies!!
I think if this was a stand alone test and my result was 930 I’d be happier. I just can’t understand why my risk has gone up so much in 3.5 years!
After speaking to my husband we decided to have the nipt and I am just trying to find a clinic who will fit me in asap as to be honest I’m going out of my mind with worry...
I am a worrier anyway and had trouble getting pregnant both times. I am afraid my baby had Down syndrome.

OP posts:
Milkybarkiddo · 21/05/2018 20:55

My baby had neck measurement well over the normal amount. We wern't even given the blood test just told 50/50 chance of chromosome issue.

We went and had a private cvs test. The private Dr told us that baby did not have downs as he had a prominent nose bone.

Your risk is so low, if baby had a visible nose bone I would be satisfied they're not downs.

Original poster
Redrosebelle · 21/05/2018 20:59

How do you know if baby has a visible nasal bone? I’m not sure what I’m looking at. If I post a pic of the scan would anyone be able to tell?

OP posts:
Original poster
Redrosebelle · 21/05/2018 21:02

Here’s my scan x

Downs screening. Can anyone help me?
OP posts:
LastNightsMakeUp · 21/05/2018 21:17

Bones show up bright white on ultrasound. I would say I can see your babies nasal bone well. On your report from your scan does it not say 'nasal bone seen' or words similar?

I know what you mean regarding the risks. I found that at 32 my risks (just from my age without any blood results and nuchal measurements would be 1:750 - or there abouts) and although I know that is low risk I'd already decided before getting the results that if the chances came back higher than that I'd have subsequent NIPT testing. Luckily they are almost equal to my previous pregnancy. Our risk is now 1:12,100 for ds and we've decided that if baby does have ds or another chromosomal abnormality with those odds then they'll be a very lucky/special child indeed!

Original poster
Redrosebelle · 21/05/2018 21:24

Everything is done electronically so I don’t have any notes or scan reports! Annoyingly! I even got my ‘risk’ through via an email.
Thank you, I am glad you came back as low risk! Such a worrying time.

OP posts:
tenbob · 21/05/2018 21:26

Where abouts in the country are you based?
Posters will be able to give some suggestions of places to have a Harmony or Panorama test

Original poster
Redrosebelle · 21/05/2018 21:29

West Midlands
I have the numbers of three clinics but tbh just want to get in ASAP so will go wherever can see me soonest!

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whyhastherumgone · 21/05/2018 21:33

My result was 1:150 and I couldn't understand why. Had private tests done and it turned out I had very low PAPP-A hormone which skewed the results. They removed the PAPP-A factor on screen and my result changed to something like 1:10,000
You might just have a slightly different level of hormone this time around as each pregnancy is different :)

AveEldon · 21/05/2018 21:35

The result is strongly pegged to your age - at age 30 at term the standard risk is 1:940. If you are 31 at term it's 1:820

www.qmul.ac.uk/wolfson/services/antenatal-screening/screening-tests/calculating-the-risk-of-downs-syndrome/ This website gives more detail on how they calculate your risk

MsP0b · 21/05/2018 21:37

Nipt is well worth the money. I had it at 10 wks preg and after that NHS didn't even bother with their tests as nipt so much more accurate!

MsP0b · 21/05/2018 21:38

Ps. Forgot to add- congrats on your pregnancy and I am sure you have nothing to worry about. I understand though, lots of us are like that!

Original poster
Redrosebelle · 21/05/2018 21:39

I wish I’d known about nipt pre 12 weeks. I’d have saved the money up and had it! As it is I have the additional stress of the nhs screening results and still have to pay privately! I wish they offered the more accurate test on the nhs. My midwife offered me an appt to sit with a doctor and discuss my
Concerns so I’ll hopefully go that too. I’m going to phone for the nipt tomorrow and get the first appt I can.
Thanks for all your replies

OP posts:
Onceuponatimethen · 21/05/2018 21:41

If you can’t get a local one nip down to London and go to fetal medicine centre on Harley st. They are amazing

LastNightsMakeUp · 21/05/2018 21:42

@Redrosebelle maybe give your midwife a call in the morning and request a copy of your scan report? And ask her to explain the results to you. Hopefully it'll be reassuring for you even whilst waiting for additional tests/results if you chose to do those too.

I have friends who have no idea what their results were, just that they were 'low risk' without any numbers given etc. I think I wouldn't be happy with just that (I'm far too into the details) but tbh I do wonder if it'd take a lot of the worrying away just to be told you were low risk. I think sometimes a little knowledge isn't necessarily a good thing!

tenbob · 21/05/2018 21:47

It isn't just about which Clinic can fit you in first. You need to check which ones can get the results back soonest

Most of the bloods get sent to a lab in London now, but double check because some tests are still done in the US and the bloods need to get sent there which adds a few days to the time to get the results back

Original poster
Redrosebelle · 21/05/2018 21:53

Thanks all. I spoke to my midwife and she didn’t really say a lot except that I could speak to a dr if I wanted to. I am sure I had a paper copy of my scan report but fairly sure we have mislaid it on the day as we had all sorts of bits of papers and leaflets!
The clinics I have found take 5-10 days (depending on clinics) do I go for one who can get my results back fastest??

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KatnissMellark · 21/05/2018 21:53

Redrosebelle, in the nicest and most supportive way, have you done the maths. With those odds, you are 99.9% likely to have a baby without DS. If you feel NIPT is worth your time and money then fair enough, but honestly I wouldn't bother.