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High risk of Down syndrome

44 replies

Pjs89 · 02/02/2019 11:12

I’m not sure if I’m posting in the right subject. It’s all a little new to me writing on forums but I didn’t know how much I would come to rely on them!
I’m 14+5 weeks pregnant. I had my scan last week and screening for Ds and Edwards. I was told during the scan that the measurement for the fluid at the back of the neck was normal at 2. I then had the blood tests to accompany these.

One week later on Wednesday (30/1) I was called with the news my baby has 1:18 chance of having DS. I’m only 29, my papa was slightly below normal at 3.1. We went into hospital the next day and paid for the Iona test to be done right away!

We are left crushed and terrified. I don’t know what to do with myself whilst we wait the results! We won’t be waiting long (3-5 days) as my father in law dropped it directly off yesterday. Has anyone had a similar experience or the same odds? It’s killing me and my husband. I wouldn’t wish this wait on my worst enemy.

Thank you in advance
X

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ricepolo · 06/02/2019 22:14

Another positive story.

With DS#1 we had high results. Can’t remember the exact numbers but high enough to get sad faces from the midwives and the veiled hints at termination. Our scan had been perfect but the blood results had changed that.

Back then there weren’t the detailed bloods there are now so we went private for a v detailed scan which looked at 13 (I think) different markers. Our ratio went to something like 1:30000 as a result and sure enough DS didn’t have Down’s.

The professor who did the scan told me it was likely that my bloods were just a bit ‘wonky’ for some reason and that this was why the NHS calculation was off and my ratio high despite a good scan. Just the way I reacted to pregnancy, and obviously when you only take two things into account, they are both very influential.

For our other children we therefore didn’t bother with the NHS testing (cue more sad faces from the midwives) since it clearly didn’t work for me.

I also agree with PP about the blessing a child with down’s can be. I have friends with children with down’s and there is such beauty there (as well as the usual frustrations you get with all children!!).

All shall be well, whichever way it goes x

MrsTiffin · 06/02/2019 22:16

They just called me and said that the results were negative. They couldn't send me a copy of the results because we'd asked for the sex chromosome to be tested but didn't want to know the sex of our baby and it was listed on there 🙂

Pjs89 · 07/02/2019 07:02

Thank you,
A week is a long time, I've come
to realise what will be, will be and whatever the outcome today we shall be blessed and just hope for health.
We would love to know the gender! Hope they tell us!
Thanks for more positive results! They've kept me going this last week!
This week had changed my out look on a lot of things so it's certainly taught me a few things!
Update your all soon I hope!🤞🏻
Xx

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Pjs89 · 08/02/2019 06:53

Still no news!
Called the hospital yesterday but nothing has arrived yet.
Been over a week now!
No news, good news? As they say!
Sad

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ricepolo · 08/02/2019 11:47

Oh I’m so sorry for the wait!! Hope it’s over soon.

Pjs89 · 08/02/2019 19:26

Had the results at lunch today!
They've come back one in a million
Feeling much more relaxed, of course I'm sure we will have many more worries to come!
Thank you for all of your support 💕💕

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peapod66 · 08/02/2019 20:40

So pleased you've had your results and that they have put your mind at rest (you might remember I posted on your other thread before it moved to this section). All the best for the rest of your pregnancy!

Pjs89 · 08/02/2019 21:29

Yes I do! @PeaPod Thank you, I can't believe how nice people have been on here! I shall definitely be using mums net again Smile
The support and encouragement from
Strangers had been lovely! Xx

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ChariotsofFish · 09/02/2019 08:52

Brilliant news! Remember to push for additional monitoring based on your low Papp-a. Good luck with the rest of your pregnancy!

Pjs89 · 09/02/2019 10:56

Yes @ChariotsofFish I'm already down for extra growth scans 🤞🏻👍🏼.

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curliegirlie · 09/02/2019 16:08

A huge congrats @Pjs89! That’s one less worry, and good that you’re getting the extra growth scans too c

Hope724 · 09/02/2019 18:46

Hello,
We are waiting harmony test results and it's agony, I expected them Friday but looks like Monday. It's our 8th ivf. Fluid was 2.3 Papp-a .81 but Hcg way off at 4.4. Can anyone offer me any help?

Pjs89 · 10/02/2019 09:02

Hi there,
I'm so sorry to hear this, we drove the hospital mad calling endlessly! Ours were due on Thursday but their was a hold back in he lab which I think is quite common.
Since going through this we've heard of so many similar stories of people we know as well, I hope you get he results you want and I would call tomorrow and give them a push. What are your odds? I can completely sympathise this time last week we were going through hell! Xx

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Pjs89 · 13/02/2019 06:54

@Hope724 how did you get on? XxThanks

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PixieDust92 · 13/02/2019 07:10

It doesn't mean your child will have ds same as if your results are low it's never a 100%. My test was low but you never know with these things. It wouldn't change anything for me but I get that it scary xx

Doc10 · 27/03/2019 15:21

Id like to thank you ladies for all this input on the forum. I have had a 1/23 results for downs. 33 yrs old two healthy babies (3,1.5) ultrasound showed baby within range but the bloodwork showed abnormalities.Did further testing and have to wait until tues for results. I want to cry every day, hoping for the best but also thinking the worst. Its the worst feeling, it feels like gasping for air just wanting a healthy baby for my other two

Flicketyflack · 27/03/2019 15:31

I can understand your shock and send you Thanks

I have worked with many people with DS and they are wonderful individuals.

Make a decision which is right for you and your situation.

I wish you all the best Smile

Sidniprince · 06/04/2019 21:36

Thanks lovely people for all this information, I'm new to writing in forums but unable to speak with family or friends at present with this but am going out of mind since receiving the call from hospital saying 1:8 chance ds, also bloods show abnormalities, I'm 39 have two healthy ds, midwife suggested I went in for the cvs test to know for sure, so did yesterday and have had so much pain since, and now have to wait up until next Friday for results, I'm so petrified so is my dh, we really have no idea what to do, we are both just walking around in a daze, trying to remain positive but then just can't stop the tears and wonder how we're all cope, I'm so grateful to be able just to write this on here and let some of these feelings emotions and worries out, thanks mumsnet

Olla85 · 27/06/2021 08:01

I know it's years from then but how did it end for you Lovely???

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