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Pregnancy

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

High risk for Down’s syndrome and Edwards and Pataus syndrome

75 replies

Lockdownbabies · 11/06/2020 11:04

Hi all just had results back from combined scan and there was too much fluid at back of babies neck my results have come back as
1:11 chance of Edwards and Pataus
And 1:41 for down syndrome
Anyone had similar results but baby has been fine???

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Lockdownbabies · 11/06/2020 18:22

@otterbaby I’m so sorry I didn’t see the other post about you having a TFRM
So sorry you had to go through this Sad

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Lockdownbabies · 11/06/2020 18:24

@minipie thanks for letting me know, we’re you ok Shortly after or felt abit fragile for a while after

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otterbaby · 11/06/2020 18:34

@Lockdownbabies it's okay. I was sore that day and maybe a bit tender the next day but alright physically after that. It was more the mental toll it had on me that was difficult, waiting until we got the results through.

Lockdownbabies · 11/06/2020 18:36

@otterbaby sorry I can imagine how hard that was!
I think that’s what’s worrying me is just the waiting like I just want to know now!

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bombaychef · 11/06/2020 18:36

I had CVS due to high risk factors with DC2 - it was swayed by my age and all was fine. He is now 8

minipie · 11/06/2020 18:46

I felt a bit wobbly for a day or so but honestly I think that was worry rather than any physical effect of the CVS. Just felt a little bruised where the needle had gone in.

wizzler · 11/06/2020 22:54

Op, really recommend you get in touch with ARC who have lots of info and are really supportive

fabulous01 · 11/06/2020 23:20

We had the CVS. Massive needle but they saw what they needed and results are in a day or so.

ARC are amazing. From memory you have to have made your decision before joining (but miy experience was about 6 years ago)

Be kind to yourself. I described my experience as going to hell and leaving a part of my soul there. Take care

TheDIsiilusionedAnarchist · 11/06/2020 23:32

I had low Papp A and low HCG but normal nuchal fold. My daughter had Edwards syndrome. We decided to continue with the pregnancy. For us that was the right decision, for others it wouldn’t be
Hoping you aren’t faced with that decision but always happy to discuss more if you want.

sunshinevalentine · 11/06/2020 23:37

Our baby's NT measurement was high at our 20 week scan and was told suspected Downs. We did the NIPT test which came back 1 in a 100,000 chance and I gave birth in April to a healthy little boy Thanks

Pygmyseahorse · 12/06/2020 00:11

I'm so sorry you are going through this

Nuchal at just under 12w was 2.7 so higher end of normal but bloods came back 1:33 for downs on Monday this week.
I saw the screening midwife Tuesday and back in Wednesday for the iona test

It's a private screening test, like harmony but I believe harmony tests for more and option for gender and gender associated conditions.
We weren't offered cvs, a detailed scan or harmony.. It was iona or nothing/amnio at 16 weeks

It's a long hard wait, I've been told 1-2 weeks for results but I feel better having non invasive and doing the only thing I can right now as opposed to nothing

The iona is 99% accurate so if it comes back high risk we will have amnio at 16 weeks and take it from there. If low risk I think we will have to see how we feel and if its enough reassurance for no further testing and hope the 20 weeks scan is clear.. But that seems like such a long wait

I hope you get good news, there is still a chance but it's wise to try and prepare, let all your emotions happen and contact arc or anyone you think will support you

I personally feel disconnected now from baby, I don't want my bump to grow or feel anything. I'm told that's normal and damage control.

All the best. I really feel for you in this situation but doing anything right now to seek answers is great, even though daunting
Sending love

sunshinevalentine · 12/06/2020 03:04

@Pygmyseahorse sending a hand hold. I know how horrible it is waiting for the results. It really was the worst week of my life when we were waiting for ours. I also felt disconnected from baby. I hope you get your results soon and it's good news xxx

Defnotunique · 12/06/2020 06:45

My bundle of chaos now 19mo, was given a 1:13 chance. It scared the living life out of me, was terrified that we were going to lose another baby, we had scans with the fetal medical consultant at our hospital who suggested there were no visible markers to suggest that there were any abnormalities or that he would have the syndromes.
They sent me home to think about what steps I wanted to take, for example amnio.
They rescanned me 2 weeks later and we're happy that baby was growing well and that there were no obvious fetal abnormalities. Thankfully, we proceeded without amnio and we now have a bundle of chaos 😂

Lockdownbabies · 12/06/2020 10:20

@Pygmyseahorse so sorry to hear your going through similar to me I hope it all works out for you and thank you Smile I am actually starting to feel the same disconnected I haven’t even looked at my scan photos!!

@Defnotunique thank you and I’m so glad it all worked out well for you in the end Smile

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Lockdownbabies · 12/06/2020 10:25

@TheDIsiilusionedAnarchist I’m sorry you went through similar if you don’t kind me asking what is your daughter like with Edwards syndrome? Only if you don’t kind me asking

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YouBringLightInToADarkPlace · 12/06/2020 23:39

Hope your scan was ok OP?

Lockdownbabies · 13/06/2020 05:10

@YouBringLightInToADarkPlace thank you but not looking good, swelling around the head and on parts of body too consultant said!

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monsterific · 13/06/2020 06:44

OP. I'm sorry to hear this what happens now have the hospital given you any advice? Thanks

Lockdownbabies · 13/06/2020 07:23

Thanks @monsterific Still need to wait for results of CVS but more than likely something will show up then I will most likely be going in for TFMR Sad

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GwenSaturn · 13/06/2020 07:53

@Lockdownbabies Sorry you're going through this, so worrying. Fingers crossed for you Thanks

otterbaby · 15/06/2020 12:16

@Lockdownbabies how did you get on with the cvs, have you had results back yet? X

Lockdownbabies · 15/06/2020 12:43

@otterbaby no Sad I’m thinking should get them back tomorrow but the consultant said he’s almost certain something will come back so

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otterbaby · 15/06/2020 13:58

Sorry to hear that 😞 fingers crossed you don't have to wait much longer to get an answer.

minipie · 15/06/2020 14:41

Oh love sorry to hear that.

Lockdownbabies · 15/06/2020 14:43

Thank you Sad

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