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Original poster

Scary 1st Trimester Screening results. Going out of my mind.

51 replies

Jessybear90 · 27/06/2017 13:14

Hi ladies,

I've been on here when I was TTC and found the forum full of very positive support.

I had my 12 week scan and the screening results for chromosomal abnormalities came back as "high risk" for Down Syndrome.

Our chance of our baby having DS is 1:85.

As a percentage I know the odds are actually in our favour but are there any ladies out there that have been in a similar situation?

We were offered a non invasive blood test with 99.7% accuracy so basically this would give a yes or no answer. We could be waiting for as long as next week for the results and the wait is destroying me. I'm seriously a mess right now.

The reason we were flagged as "high risk" was because of the bloods. Everything else's including Nuchal Translucency Test was normal. The bloods shows high HCG Beta and low Papp-A.

These are my results:

Nuchal Translucency: 1.81mm (normal)
Crown to rump length: 70.6mm
Free beta HCG: 3.9MoM
PAPP-A: 0.43MoM

Other factors such as my age, I don't smoke and no diabetes didn't effect it and with the NT measuring normal, the 1:85 ratio has come purely from the blood work.

Any advice from anyone in a similar/has been in a similar situation?

I'm not coping very well with the waiting for the results so looking for a bit of support. X

OP posts:
Original poster
Jessybear90 · 28/06/2017 16:53

Silverlinings, I don't blame you at all. I regret asking for it now. It just feels like me and my baby have been branded as a scary statistic :( x

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Original poster
Jessybear90 · 28/06/2017 16:58

Also, I can't find the David Wright article, does anyone have the link?

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acquiescence · 28/06/2017 17:19

This sounds so stressful, I really feel for you.
Please try and remember that a 1:85 risk means that there is an 84/85 chance that it is all fine, or another way of looking at it is that it is a 98.8% chance that all will be ok, which sounds pretty good!

Original poster
Jessybear90 · 28/06/2017 17:28

Thanks acquiescence,

The anxiety just comes in waves. Sometimes I feel positive, and then sometimes terrified. Today I had particularly bad anxiety and getting the actual phone call.

I knew it wouldn't be today, because the bloods would have only just got to the lab, but it was just the thought of my phone ringing, the hospital number flashing up, it was enough to make me almost throw up :(

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Original poster
Jessybear90 · 28/06/2017 17:29

anxiety about getting the phone call should I say

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123456kent · 28/06/2017 17:35

I was terrified about the practicalities of receiving that phone call. In the end we arranged it so my partner would receive the call... is that a possibility for you...
My results were sent to America last Tuesday morning and my results were with me on Monday around 2pm. Came much quicker than I had expected and took me by surprise. The best relief I've ever felt. Hopefully yours will be as surprisingly quick and bring equal relief!

Roseandbee · 28/06/2017 18:46

I'm very hopeful you will get a good result with IONA especially as you had no other indicators. My friend has recently gone through this and got the all clear through the NIPT test. I've had it done before my 12 week scan as I can fully imagine how stressful your situation must be right now. Hope you get your results soon

Original poster
Jessybear90 · 28/06/2017 19:00

Thanks ladies, I can't explain how supportive your words have been to me. I'm seriously greatful for the advice because I do feel very alone. X

OP posts:
Original poster
Jessybear90 · 30/06/2017 18:25

Called the hospital and they said the estimated results day is Tuesday :( so they have taken the full five days. Typical. Can't believe it's been Monday since we had the test done, five painful days of waiting and now being told I have to wait another 4 days. It's killing me x

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123456kent · 30/06/2017 23:17

Very sorry to hear that, that's a real shame.
Just remember that your odds translate to a 98.8% chance that this is ok... in real life those are great odds. It's only because it's SO important and precious that you can't see the wood for the trees. This was me one week ago (with worse odds) and now I realise I should have more faith things would be ok and not worried myself absolutely sick over it.
Keep busy over the weekend - that is my best advice for the next few days

Original poster
Jessybear90 · 01/07/2017 08:28

Thanks Kent that means a lot and you are right. It's crazy to think that I could potentially be worrying myself sick over nothing at all.

I'm just very frustrated that we have had to wait 7 days for something private that we have had to pay for.

The NHS told me that very soon they will be making Iona free on the NHS. If this is the case I really hope that they will offer this straight away so that you already have the answers when you go for your scan. I can image there has been so many people who have been through the most horrible waits for the these results for "high risk" when they really didn't have to suffer x

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SilverLinings2014 · 03/07/2017 08:44

Thinking of you Jessy.
Hope you get the results today; the not knowing is just awful Flowers

Original poster
Jessybear90 · 03/07/2017 15:25

Hi Silver linings,

Thank you for thinking of me. I have been ringing all morning and when I finally got through the person who is authorised to view the results isn't in and I have to call back tomorrow.

This now means they have taken the maximum lead time and I'll be distraught if they don't have them tomorrow when I've held hopes of getting them earlier that the "estimated" time.

Hoping it's tomorrow, I can't keep on like this the wait is making me ill. The stress can't be good for the baby x

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123456kent · 03/07/2017 16:00

Very sorry for your wait, that is really tough. Stressing isn't good for baby but you will be doing no harm in the short term so don't worry about that on top of everything, I got more stressed with everyone telling me that my stressing wasn't good for baby during my 7 day wait.
In 24 hours you will have the results you hope for and this can all be put behind you (fingers crossed).
The waiting is torture.

Original poster
Jessybear90 · 03/07/2017 16:52

Thanks Kent,

Because this wait has felt like an eternity I can't remember what I used to feel like before I felt this big black cloud. I'm trying to remain positive but something is telling me they may not still have them tomorrow only because I can't imagine me getting any news at all.

It's so hard to remain positive x

OP posts:
123456kent · 03/07/2017 17:39

I felt all these same things...
It will be tomorrow.
And it will 98.8% be good news (which is fantastic odds!)

123456kent · 03/07/2017 17:54

I felt all these same things...
It will be tomorrow.
And it will 98.8% be good news (which is fantastic odds!)

Original poster
Jessybear90 · 03/07/2017 18:38

Thanks Kent, I promise to keep you all updated on my results as soon as I can get myself together tomorrow. And yes, OH keeps reminding me that the odds being 98.8% means they are very much STILL in our favour.

But it I think the staff just made it sound much scarier because when talking us through the options of the testing, they did ask us if we even wished to continue with the pregnancy still at that point and the answer was of course we do!

I've decided if we get the all clear tomorrow then I'm booking myself in for another private scan locally. Because I felt like the joy and happiness of seeing my little one wriggle about on that day were just snatched from me as soon as we got the dreaded "high risk" x

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Original poster
Jessybear90 · 04/07/2017 10:29

Hi ladies so happy to say that we came back as all clear for all three trisomy! I have no idea what's wrong with the bloods I'm going to investigate this. The perk of the NIPT (Iona) is that because they are looking at the DNA we got to find out the sex at 14 weeks, it's a boy! Xx

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owltrousers · 04/07/2017 11:09

That is good news @Jessybear90! I have been thinking about you!

Congrats on a lovely baby boy x

SeatOfMyPants · 04/07/2017 12:03

Great news. Congrats.

I wouldn't tie yourself in knots wondering if there was some underlying issue with your bloods. It's just one of those things, there's prpobably no discoverable reason - it's just not a completely accurate test - the new DNA tests are far superior (as you know!).

Enjoy the pregnancy and put this behind you.

Original poster
Jessybear90 · 04/07/2017 12:09

Thanks all you have been massively supportive. The anxiety I have felt through all this still hasn't shifted and I feel quite overwhelmed. I think it will take a few days to sink in x

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SilverLinings2014 · 04/07/2017 13:04

So pleased to read your update Jessy. Congratulations!

I'm having a boy too Smile

123456kent · 04/07/2017 13:08

Great news, congratulations on your baby boy!
Put all the worry behind you and try and start to enjoy being pregnant again... the fun bit will be coming soon - the kicking! :-)

Original poster
Jessybear90 · 04/07/2017 13:12

Congrats silverlinings!

I'm very excited to now just enjoying his experience and trying to let go of all the anxiety xx

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