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Pregnancy

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

Edwards syndrom high risk

19 replies

Difficulttimes17 · 26/06/2018 15:23

Hi, i had a phone call from midwife at 7:15am this morning to say the baby has a high risk of edwards syndrome 1 in 93 chance. Pretty much devastated right now and dont know how to process it as ive had 3 previous miscarriages i thought all was okay this time. They said my hormone level is low 0.30 thats why they think its tipped it against me. So now i dont know what that means either with my hormone level being low..

I went for a private blood screening test and now waiting results. The hospital tried to be very reassuring this morning but i dont know what to think to be honest.

I had a scan this morning and baby was fine but other worrying thing i noticed last week had a 12 week scan and baby was curled up evem after a 10 min walk around and today same thing. I didnt walk around today between scans but on the scan we had the baby was curled up. They did say he had a strong heart beat and all limbs were there so nothing obvious wrong. But im just lost in a world of pain ive already had so much bad news why would now be any different ? Is there anyone that has gone through a similar issues thats can give me some advice ? May have to wait up to a week now for the results which is the longest wit of my life to date xx

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JustVent · 26/06/2018 16:16

Sorry to hear this. If the baby is curled up does this indicate Edwards then?

Liverbird77 · 26/06/2018 16:27

I am so sorry. If the test you have taken is serenity or harmony then just hang tight for a few days until results...these are much more accurate. I hope you get good news, I really do Flowers

MarmiteTermite · 26/06/2018 18:02

That also means that the baby has a 92 out of 93 chance of not having Eswards syndrome. Fingers crossed for you x

sofato5miles · 26/06/2018 18:06

My son was 1 in 6 for Edwards and 1 in 2 for Downs. He has no syndromes at all and is a healthy neuro typical child.

These are guidelines and the results are worth exploring. I had a CVS and all was good, though it didn't stop me worrying for the rest of that pregnancy.

Difficulttimes17 · 26/06/2018 19:53

Thanks so much everyone. The odds could be much worse i kno that. I guess im worrying more because of the previous miscarriages of which ive also had a missed miscarriage so just added to my concerns i guess. Im probably just over thinking things about the baby being curled up the hospitak didnt have any concerns. I know it was on my 12 week scan and again today. I had a low risk of downs syndrom but a high risk of edwards. Just have to wait now for the results i will be dread picking up the phone. Thanks for your good wishes everyone xx

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Peanutty86 · 26/06/2018 20:01

Sorry to hear this. Realistically, there is a huge chance that your baby is absolutely fine. Has anyone spoken to you about a harmony test? It's a private test where they take your bloods and filter out baby's DNA to get much more accurate results. You would have to pay for the test though.

Difficulttimes17 · 26/06/2018 20:24

Thank you i think thats what i had today or a version of it. They called it the Iona test. I have to wait now for the results they said between 3-5 working days they posted them off today wont be recieved by lad untill tomorrow so most likely early next week. I choose not to have the invasive test at this stage. Just having waves of worry due to my history. I really thought this pregnancy was okay. They keep telling me the scans of the baby ive had 4 scans now all appear fine and the pregnancy due date they have given me after 12 week scan is bang on when i expected it to be. So at moment appears to be developing normally. Im just worried sick about it all right now. X

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Difficulttimes17 · 26/06/2018 20:25

P.s. i paid for the test today so assuming its the same as thw harmony test. X

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Difficulttimes17 · 26/06/2018 20:56

My results from combined test are

Hcgb 0.30
NT 1.27
PAPP A 0.30

I have low risk of downs from combined but high risk of edwards syndrome

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Peanutty86 · 27/06/2018 00:47

Yes, just googled it - it's just called differently as it's the one lab offering it. It's all NIPT. It'll be a few anxious days but I'm sure it'll be all fine. Will keep my fingers crossed for you and hope you let us know the outcome x

Difficulttimes17 · 27/06/2018 11:22

Thank you Peanutty86 i will let you know what happens. Thanks for the good wishes i do need them xx

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ToesInWater · 27/06/2018 13:39

Hoping you will get good news, the waiting is horrible xx

Difficulttimes17 · 27/06/2018 16:58

Thank you toesinwater. It certainly is xxx

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notapizzaeater · 27/06/2018 17:08

Waiting is the worse, have you something that can distract you ?

Sparklesanddiamomdsforever · 27/06/2018 17:38

I had the Iona, due to my bloods giving me a 1 in 6 risk. Came back fine Smile

Difficulttimes17 · 02/07/2018 20:14

Hi all thanks again for taking the time to post. Just in case anyone is desperatly searching for information on all this as i was. I had a combined test and was given 1in 93 chance for edwards. Ive had the IONA results back today and all is okay. So over th moon cant tell you its such a relief. They have come back at a million to one for everything, downs syndrome and edwards syndrome so happy.. thanks again for taking time and trouble to share your experiences it really helped to get through the anxiety at the time much love Xxx

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notapizzaeater · 02/07/2018 22:35

Fantastic news 😀

JustVent · 03/07/2018 06:56

That’s absolutely fantastic news, congratulations. X

isambardo · 03/07/2018 11:24

Brilliant news, so pleased for you. What a rollercoaster!

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