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

Downs testing

25 replies

chloe240 · 15/03/2021 20:07

So I had my 12 week dating scan and the nuchal fold was measuring at 4.1 I then had follow up bloods which put me at 1:4 for ds and 1:82 for edwards and patau. I went in for a cvs today and they couldn't do this so now have to wait until I'm 16+3 (I'm currently 13+2) has anyone had these or similar results and had a positive outcome? I'm so worried and feel I have really detached from this pregnancy because of fear and worry. I'm just looking for abit of reassurance really! Thank you in advance

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Nightmanagerfan · 15/03/2021 20:21

I’m so sorry to hear about this. So anxiety inducing. I know this isn’t what you asked but I had a similar situation with a 1:5 risk for DS, subsequently confirmed by CVS. Feel free to ask for more info.

KTF367 · 17/03/2021 20:19

@chloe240 I am in a similar situation. My screening was high risk based on NT and Papp-A. I was waiting on the harmony test result so things got delayed l. Harmony was inconclusive so went for a CVS last week and it couldn’t be performed so now waiting til next Mon for Amnio. The waiting is horrible, I know exactly how you feel. A few things that have helped me feel better:
The NHS screening take many measurements for NT and always take the highest to give a worst case scenario.
1 in 4 - the odds are still in your favour.
If your scan was normal aside from the NT, this is positive news too.

I am no expert but have been in this limbo since my 12 week scan for 3 weeks now so know how you feel. I recommend not to Google anything (I did) but there are MANY positive stories about high NT measurements

Sending love x

WhizzPop1 · 17/03/2021 21:13

Read your post and thought now would be a good time to set up an account. We went through something similar. At 13 weeks the NT measurement was 4.5mm. Together with bloods we were given odds of 1 in 6 for Downs. We opted for a private NIPT test which thankfully came back OK. We did have to have extra ultrasound scans, a heart echo for the baby, and once the baby was born genetic testing, and these were all OK too. We now have a one year old baby and everything seems fine. Until you have anything confirmed there is always hope.

MadeForThis · 17/03/2021 22:25

We had a NT of 4.5. Bloods came back with a 1:5 for Downs.

Immediately did the harmony test. Results back within a week. 1:10,000

I was happy to trust that test so didn't to amnio.

Dd is now 5. No health issues.

The NHS test looks at lots of things including age and weight. They are far far far from diagnostic.

If you don't want to wait until 16 weeks I highly recommend a Harmony test.

KTF367 · 18/03/2021 07:00

@chloe240 you may be able to get Harmony on the NHS after a high result for screening. Otherwise, if you can afford to pay to have it privately?

chloe240 · 18/03/2021 09:38

[quote KTF367]@chloe240 you may be able to get Harmony on the NHS after a high result for screening. Otherwise, if you can afford to pay to have it privately?[/quote]
Thank you so much for commenting. It is helping so much hearing positive stories, unfortunately private isn't something we can afford at the moment so we just have the 3 week wait for the amnio, thank you xxx

OP posts:
chloe240 · 18/03/2021 09:39

@WhizzPop1

Read your post and thought now would be a good time to set up an account. We went through something similar. At 13 weeks the NT measurement was 4.5mm. Together with bloods we were given odds of 1 in 6 for Downs. We opted for a private NIPT test which thankfully came back OK. We did have to have extra ultrasound scans, a heart echo for the baby, and once the baby was born genetic testing, and these were all OK too. We now have a one year old baby and everything seems fine. Until you have anything confirmed there is always hope.
Thank you so much for this it is really helping seeing the positive stories as I have been a complete mess with worry at 24 you never imagine to get that news or that it will ever happened to you! Thank you again xx
OP posts:
chloe240 · 18/03/2021 09:40

[quote KTF367]@chloe240 I am in a similar situation. My screening was high risk based on NT and Papp-A. I was waiting on the harmony test result so things got delayed l. Harmony was inconclusive so went for a CVS last week and it couldn’t be performed so now waiting til next Mon for Amnio. The waiting is horrible, I know exactly how you feel. A few things that have helped me feel better:
The NHS screening take many measurements for NT and always take the highest to give a worst case scenario.
1 in 4 - the odds are still in your favour.
If your scan was normal aside from the NT, this is positive news too.

I am no expert but have been in this limbo since my 12 week scan for 3 weeks now so know how you feel. I recommend not to Google anything (I did) but there are MANY positive stories about high NT measurements

Sending love x[/quote]
Thank you so much, they couldn't do my cvs either and did say they could get me in sooner to try the cvs again but they don't think my placenta is going to move and be accessible xx

OP posts:
chloe240 · 18/03/2021 09:41

@Nightmanagerfan

I’m so sorry to hear about this. So anxiety inducing. I know this isn’t what you asked but I had a similar situation with a 1:5 risk for DS, subsequently confirmed by CVS. Feel free to ask for more info.
Thank you so much for replying xxx
OP posts:
KTF367 · 18/03/2021 11:25

Feel free to PM me if you want, I am going through this now too.

Sending lots of positive wishes xx

chloe240 · 25/03/2021 11:02

@KTF367

Feel free to PM me if you want, I am going through this now too.

Sending lots of positive wishes xx

Sorry I have just seen your reply, I haven't quite worked out how to pm!😂 how did your amniocentesis go?xx
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KTF367 · 25/03/2021 11:16

@chloe240 the Amnio was ok. Not painful just nerve wracking but the wait is awful. Meant to be finding out today or tomorrow and I am beside myself.

KTF367 · 25/03/2021 14:15

Just heard - Amnio clear! Never lose hope. I was in the same boat as you xxx

chloe240 · 29/03/2021 19:18

@KTF367

Just heard - Amnio clear! Never lose hope. I was in the same boat as you xxx
I'm so happy for you! Congrats what were your screening results and markers if you don't mind me asking xxx
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KTF367 · 29/03/2021 20:05

My NT was 2.9mm and then screening came back as 1 in 14. They didn’t see any soft markers on my subsequent scan (nasal bone, they also look at the heart and organs) but also had 2 x inconclusive harmony results so was very panicked. When is your Amnio?

chloe240 · 30/03/2021 20:07

@KTF367

My NT was 2.9mm and then screening came back as 1 in 14. They didn’t see any soft markers on my subsequent scan (nasal bone, they also look at the heart and organs) but also had 2 x inconclusive harmony results so was very panicked. When is your Amnio?
I'm so glad al is well with you, you must be so relieved. My amnio is next Tuesday starting to panic more and more as it gets closer!xxx
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KTF367 · 30/03/2021 20:33

Don’t panic, the high high chances are it will be fine and I did a lot of reading around and many studies have shown that the risk of miscarriage isn’t that much higher than the background risk so try not to worry. The waiting is the worst part though, but hopefully it passes super quick. Just keep busy, go to bed early etc.

Thinking of you for Tuesday xx

Zanina · 31/03/2021 11:33

Wishing you all the best OP xxx

legohaus · 05/04/2021 15:18

@chloe240 I just wanted to send you some solidarity in this limbo period. I had my 12 week scan last Monday, NT measured 4.2mm. Went straight for a NIPT test and now waiting the results.

Sending you good vibes and a hand hold if you need it. You're not alone x

chloe240 · 08/04/2021 08:31

@KTF367

Don’t panic, the high high chances are it will be fine and I did a lot of reading around and many studies have shown that the risk of miscarriage isn’t that much higher than the background risk so try not to worry. The waiting is the worst part though, but hopefully it passes super quick. Just keep busy, go to bed early etc.

Thinking of you for Tuesday xx

Thank you, the consultant said it was an uncomplicated amnio so now just racking my brains and waiting for the results 🤞xxx
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KTF367 · 08/04/2021 08:54

That’s great news. My midwife also told me ALOT of the risk is around the procedure so if it was uncomplicated then you’re doing great. Rest up!!

chloe240 · 08/04/2021 09:01

@KTF367

That’s great news. My midwife also told me ALOT of the risk is around the procedure so if it was uncomplicated then you’re doing great. Rest up!!
How long does it take for them to cal with the results do you know? I'm driving myself mad🤦‍♀️ thank you again xxx
OP posts:
LadyEloise · 15/04/2021 10:33

@chloe240
Thinking of you. 💐

chloe240 · 22/04/2021 18:09

@LadyEloise

@chloe240 Thinking of you. 💐
Thank you everyone for your help and advice our baby boy was confirmed ds and unfortunately he had more complications. We delivered our little boy on Friday at 18 weeks 💙
OP posts:
LadyEloise · 22/04/2021 18:59

Oh chloe240Sad

Thinking of you Thanks

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