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High risk for Edwards/Pataus

11 replies

KSAS · 15/03/2023 18:37

Hi, I’ve recently had my dating scan. All was fine I was actually 5 days ahead of where I thought I was at exactly 13 weeks. NT was 1.2mm. But this week have had a call to say we are 1 in 19 chance of Edwards/pataus. With
really low HCG: 0.11
low PAPPA-a: 0.26

we have opted for the NIPT but going out of my mind with the wait. I’m just struggling to understand how the levels can be so low and try and still stay positive.

scan and NT looked fine but I’m not sure how much that means.

Anyone had any similar levels?

Thanks all ❤️

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winningeasy · 15/03/2023 18:52

Firstly congrats on your pregnancy. That NT is really low, I think it's highly unlikely anything will be wrong. Also I think it's more like hgc would be high for trisomy. Also if nose bone was pronounced on the scan then that's another reassurance.

I was high risk for my first child, for my second currently pregnant I skipped the combined test and went straight for for the NIPT. Age is a big factor in these tests, possibly bmi too not sure.

The Pappa-A is low so speak to midwife about taking low dose aspirin.

Try not to worry, I know that's really hard, it's the worst bit of the pregnancy, I promise it will get better after you get over these tests - good luck xx

KSAS · 15/03/2023 22:26

Thanks for your message and well wishes!

Yes I thought the NT was really low, and they didn’t mentioned any issues with the nose at the scan at all. They didn’t have any concerns to report to us, so just hoping for that to be a positive sign.

HCG seems to be low for Edwards/pataus and then higher for downs I think from reading up on it. We were give 1/75000 for downs which was really reassuring.

Thank you for your message, sometimes just nice to hear from others during the wait xx

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EGP · 16/03/2023 06:14

So sorry you are also going through this. We received the results of the basic screening on Tuesday and it was 1 in 150 for Edwards and Pataus (and 1 in 48,000 for downs). Similarly to you the midwife told us my HCG levels were very low and PAPPA were borderline although she gave us no specific figures.

Our NT measurement was within normal range at 1.6mm and all the other factors taken into account on the screening were presumed low risk so I'm really concerned it's my bloods that have triggered the high risk.

We had an NIPT on Tuesday and the wait is already torture. How long have you been waiting for your NIPT results?

Sending love xx

KSAS · 16/03/2023 09:24

Sending love too!!

I have my NIPT on Tuesday too. They said about a week so I’m trying to think I will know more by latest end of next week.

Hoping for the best for you xxx

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MinBins · 16/03/2023 12:43

Hello

I had my scan a couple of weeks ago and everything was normal -

NT-1.4mm clear nose lines.

The PaPP-A was low at 0.25 and the HCG was 0.65

I was given 1:65 risk rating and did my NIPT last Wednesday. I've been on edge since. Wishing you all luck - I've heard many positive stories on this site and that has been reassuring. But I just can't seem to settle until I have the results either way.

KSAS · 16/03/2023 15:55

Hi, the wait is agonising I hope you’re doing as ok as can be.

Did they give you a time scale for results?x

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MinBins · 16/03/2023 16:06

They told me up to 14 days but that it's usually 7-8 days, so I'm hoping any day now. Ah I know I wasn't able to focus on work or anything today properly.

Staying positive (or trying to)!

anxiouslywaiting01 · 11/04/2023 16:13

hello, had my scan a few weeks ago all went fine but have been told I’m high risk for edwards & pataus - 1 in 21. Similar numbers to yourself, had NIPT today. How long did you wait for your results? Hope you had some positive news 🤞🏼

KSAS · 13/04/2023 09:52

Hi,

We had the NIPT on the Tuesday morning and we received a phone call with our results on the Friday afternoon. (I do think this was really quick some may take longer). The results came back as lower risk so we are just waiting for our 20 weeks scan now and hoping all is ok.

Hope you get your results back soon 🤞🏼 x

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anxiouslywaiting01 · 13/04/2023 17:35

Great news! Hope all goes well at your 20 week scan! x

KSAS · 13/04/2023 20:40

Thank you! Hope your results come back soon and have a positive outcome for you 🤞🏼 the wait is agonising! Sending lots of love x

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