No NT measurement and not testing for Pataus orEdwards

[cosylife]

Had our 12 week scan today and baby was so active it took 2 scans and a lot of moving around to trying and get a measurement of baby. They couldn’t get a NT measurement and said they’ll be doing the quad test at 16 weeks because of this. The midwife also said they wouldn’t test for Edwards or Patau syndrome and only would if the abnormalities showed up in the 20 week scan.

Does that sound right? With my first pregnancy I could swear that I was tested for it all!

My PGs were quite some time ago. I wouldn't worry too much about Edwards or Palau though, it was suspected that our first had one of those and he literally didn't move on the scan, just lay there. It was only during subsequent PGs that I saw how that had been really quite concerning in itself.

This is standard in NI unfortunately - no NT measurements or combined test at 12 weeks, it's just a dating scan. The quad test is available on request but most people don't know that.

You could go private, there are tests like Harmony but they're quite expensive. (Probably called something else now, I'm a bit out of date.)

I couldn't have all the tests in my first pregnancy for similar reasons. They told me to wait to 16 weeks but then refused to do that test. I couldn't understand why.
In my second pregnancy I paid for a test very similar to the harmony one. PregnancySafe I think it was. Has to be done before 14 weeks though.
They did a scan and a blood test.
I felt a lot better for taking control myself so I was informed rather than fobbed off with we couldn't/ can't do that now just wait.
If I were you I'd get a private test done but you might have to be quick depending on when it can be done.

Thank you so much for all your replies and advice!

Yes does sound right, the quad test only tests for downs. You could get private NIPT blood test from now if you really desperately want the screening and NIPT more accurate than the combined test you would of had anyway

Yes, unfortunately if they can't get the NT measurement you can't do the combined test, you have to do the quad, I had the same, I was super stressed with it all! I looked at private NIPT as well for this reason but didn't do it in the end. They managed to get one NT measurement at my scan and the midwife said it "looked fine" - so i knew the NT wasn't raised. So it depends on the situation, quad test came back fine but the waiting wasn't fun. Given my age i think if i have another baby i'll just pay for the private NIPT at 10 weeks to avoid the waiting and stress!

I’m going through this too. Baby wasn’t playing ball at the 12 week scan but the sonographer said things looked straight and narrow behind the neck which she seemed very happy about.

Just had my blood test today at 14+5. I asked the lady taking my blood when I’d find out but she was new and didn’t know, she did say I’d get a letter either way.

My midwife said if the sonographer was concerned she would have booked me another scan to get the NT measurement a few days after and told me not to worry. It’s so hard not to though!

How long did it take for the quad results to come back for anyone?

@SarahB88 mine took around 3-4 working days but I didn't get the letter for 7 ish days! I only found out they were back cos I rang and asked the screening team but they weren't happy with me asking!! She said they were uploaded to badger but mine didn't appear on there as I was checking all the time! So yeah if there's an issue they'd probably call within a week (3/4 days) But with the letter it was around 7 working days

However everywhere has different timescales! I was told no to a second scan to get accurate measurements! As I asked and they said nah they just refer for the quad test!

@suz2285 oh I hope mine is that quick! I’ll be checking my badger notes as well then. My first lot of bloods for the general tests went up on there within a couple of days so hopefully it’s just as quick this time.

Everywhere is so different aren’t they!

@SarahB88 if mine had gone onto badger as she said it would've been 3 days I think! But they weren't on there, and she argued with me that they were, so I had to email my own midwife and she thought I should be able to see them too but I still couldn't 🙈 must've been a badger issue! Anyway... hopefully it'll be quick! I was obsessively opening badger ever few hours for days 😂

@SarahB88 oh bless you, it’s a tough wait isn’t it! I can’t have my quad test for another couple of weeks but found myself looking at nasal bones in my scan yesterday. Things pregnancy drives us to!

I was told that I’d receive a letter with the results but if it was a high risk that they would call me. She said that it’s unlikely it’s a high risk but didn’t tell me any details as to why she said that. I’m not usually a worrier but finding myself thinking about this a lot!

@suz2285 I’ve checked my badger notes and a line is showing up for it already with not published as the status so hopefully this is a good start!

@cosylife omg I’ve been checking my scans for nasal bones too trying to see something! I’m pretty sure I can see something but you still worry!

None of the medical people seem worried about me at all so I’m trying to take that as a good sign but you can’t help but worry!

Do you have badger notes? I’ve just popped a reply to someone else there about mine so I’m hoping I don’t have to wait for a letter.

@SarahB88 no I’m based in Wales and we still have the old school folder of notes which is frustrating!

I feel like I had the same issue with my first pregnancy and the odds were 1:38000 so I’m hoping for a similar result!

@cosylife @SarahB88 my results were 1:5000 and I was told that's the lowest they now report in my area, so don't panic if it's not 1:38000 or something now!

They would have said on the scan if they saw anything wrong like absent nasal bone or anything else... 🤞

@suz2285 I think that’s what my midwife was trying to say to me so I am trying not to worry. I don’t know anyone in real life who didn’t get their NT measurement at 12 weeks so this thread has been really helpful!

@cosylife I hope you get your letter soon!!!

Just to update that I finally got my results back today! 1:5000 chance so the lowest it can be thankfully and no further action needed.

Hope everyone else is ok.

The combined screening test tests a for all three but can only be done in a small time window. The quad does just test for downs. Edward’s and pataus are much rarer and more things can be picked up more easily on the anatomy scan.
For complete peace of mind you could pay privately and get a nipty blood test. I did this in both of my pregnancies and opted out of the NHS screening.

@SarahB88 great news 🥳

Amazing news @SarahB88 ! I’ve got my quad test in 10 days so still in the waiting game but I’m feeling calm and okay about it all. Will keep you all updated!

Thanks @Nutellaonall - the midwife said that nothing was picked up on the scan for Edwards/pataus but that it’s clearer in a 20 week scan to test for them. Prices near me are £500 for a NIPT test which isn’t ideal so close to Christmas!

Just wanted to pop an update that my quad results came back today as low risk, 1:8400. Really relieved!

@cosylife great news 🥳

That’s brilliant news @cosylife !!