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High risk after combined test

45 replies

FairyPixie1983 · 05/08/2023 18:55

High just wanted to hear from anyone who's had this
I'm 39 nearly 40 and have just had the phone call off my midwife this week to say my combined tests had came back as 1 in 3 for down syndrome and 1 in 38 edwards
I can't sleep I keep crying and googling everything
I know age is higher risk but I'm so confused with results as my paper said age chance 1/119 which to me would put everyone my age higher risk yet I know quite a few people who had children older than me over the last few years and didint come back high risk so I don't get it if it says age alone 119
My papp a was low 0.28
But hcg was also a little low 0.78
Nt measured 2.7mm which I was told was normal range and nothing else picked up on my 12 week scan .
I opted for the cvs as I didint want another high or low risk for nipt test although I know they say its more accurate
But I went for cvs Thursday and they couldn't do it due to where my placenta was he said the risk of miscarriage would be too high I was so upset cos I feel like I'm in limbo
They have rebooked me to try again this Thurs but I went for the nipt yesterday aswell incase they can't do the cvs when I go again Thursday which he said could happen
I am utterly heartbroken over this because my screening midwife said with my odds it usually turns out baby is affected and when I went for cvs she seemed to say same that they have the odd miracle but usually baby is affected
I have decided I won't continue a pregnancy if baby is affected which makes things even harder but I have a cousin with severe downs and I know you can't predict how affected they are but I know how hard things have been for him and his mum.
But the thought of a termination absolute breaks me

OP posts:
FairyPixie1983 · 10/08/2023 18:16

@Claire12098 husband has just switched off won't talk and I am completely broken
I know , in my heart I know there's no point clinging to 10% xx

OP posts:
WantingToEducate · 10/08/2023 18:23

FairyPixie1983 · 10/08/2023 18:16

@Claire12098 husband has just switched off won't talk and I am completely broken
I know , in my heart I know there's no point clinging to 10% xx

Have you confided in anyone else that you can talk to? I know it must be hard for your husband too but he can’t just push you away 😢

I’m really sorry about your NIPT results - it’s understandable why you are so broken-hearted. The world is such an unfair and cruel place to be sometimes x

User69611 · 10/08/2023 18:46

So sorry and saddened to hear the news @FairyPixie1983
utterly heartbreaking :( Thinking of you a lot. Agree with above if there is anyone else you can talk to that would be good. I’m sure your husband is just in shock and will speak soon but it must make it feel more isolating in the moment in this worst pain.

FairyPixie1983 · 10/08/2023 18:58

@User69611 it's actually my 15 year old daughter who is giving me the hugs xx

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SJG1987 · 10/08/2023 23:35

i am so so sorry. How awful for you. Sending you the biggest hug.

FairyPixie1983 · 19/08/2023 22:37

Update on post
Had amnio Thursday and never got as far as results for t21 they are due Monday
Woke up this morning with pressure feeling like a water infection
Lay in bed and pain got worse through morning till I had to go to a & e
Smallest amount of blood on toilet roll when wiped nothing else just agonising intermittent pains
When in a & e I stood up and waters went followed not long after by the delivery at just over 15 weeks
I have then been in hospital got feet and hand prints done and held him
Midwife said looks like a boy but amnio will confirm Monday
I just pray that this amnio backs up the nipt and baby did actually have down syndrome cos looking at him I worry as he looks fine although I know early to tell.
If it is clear I will be racked with guilt incase the amnio or all this stress even caused this on a healthy Baby
If it is positive I will at least be more at peace that his life ended naturally not by me having to make that hard decision
Either way though I feel so sad that things have turned Out this way
The midwife did say most nipt tests are accurate I really hope so

OP posts:
Claire12098 · 19/08/2023 22:59

@FairyPixie1983 I’m so so sorry for you, how awful. Thinking of you xx

Emerald4512 · 19/08/2023 23:07

I'm so sorry you're going through this. What a horrible situation however it sounds like you have such a wonderful, kind, loving daughter ❤️

Bloodystressed1 · 19/08/2023 23:28

@FairyPixie1983 So sorry to hear you’ve had yet more trauma and heartbreak, so sorry for your loss and thinking of you and your little one. Xx

User69611 · 19/08/2023 23:48

So so sorry @FairyPixie1983 , what a complicated loss to make sense of :( and to still have the wait for amino result on top of processing what has just happened. Really thinking of you and hope you are getting many hugs from your daughter and partner. Xxxxxx

jmm499 · 20/08/2023 07:14

Oh @FairyPixie1983 I’m so sorry to read this - how heartbreaking 💔 Sending you so much love xxx

FairyPixie1983 · 21/08/2023 11:07

Thank you for your messages
Amnio results have came back this morning positive for t21 after a roller coaster few weeks
I can at least now take some peace in that as hard as these last few days have been that nature made that decision for us in the end
Doesn't make it any easier that we have lost our much wanted son though and I'm heartbroken xx

OP posts:
CaribbeanCupcake · 21/08/2023 13:08

I am so sorry @FairyPixie1983 xxx your little boy will always be with you.
Any decision you would have made would have been the right one but yes nature has taken over and I really hope you can find some peace in that.
I've been thinking of you so much and I will for a long time. Please take care of yourself xxx

FairyPixie1983 · 21/08/2023 13:16

@CaribbeanCupcake thank u xx

OP posts:
Claire12098 · 21/08/2023 13:51

@FairyPixie1983 so sorry that this all happened, so very heartbreaking for you. I also really hope you can find some peace that nature made the decision for you even if it doesn’t stop the pain you must be feeling now. Take care xx

User69611 · 21/08/2023 14:49

Thinking of you @FairyPixie1983 . What a horribly difficult time, take care these next few weeks and again I’m so sorry for the loss of your baby boy xxx

jmm499 · 21/08/2023 22:22

Thinking of you and your little boy @FairyPixie1983 - I’m
sending so much love and strength xxx

yarnmum · 23/08/2023 20:06

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ChristmasKraken · 23/08/2023 21:11

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SJG1987 · 27/08/2023 19:37

So very sorry. Sending my thoughts and well wishes your way. Be kind to yourself x

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