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High Risk for Down Syndrome/Edwards-Positive Stories needed please!

213 replies

MumOfMiracles · 20/03/2021 09:03

Hi lovely Mummy's, really need encouragement today, this is my 3rd pregnancy and after a really wonderful 12 week scan seeing my sweet baby. Got a call 2 days later to say I am high risk for Downs (1 in 143 chance) and Edward's (1 in 243) For my last 2 it was 1 in over a thousand so this really came as a shock! Not only that I have low Pappa-A so am taking aspirin every night to support my placenta. Keeping all this quiet from friends and family as I don't want the pressure of keeping them posted and dealing with their reactions to the news. So feeling very overwhelmed right now emotionally and have opted to take the Iona test on Monday (NHS version of Harmony) to get a better idea of what my chances really are.

Positive stories or any words of comfort or encouragement would mean so much right now.

Thank you! xx

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SarahD19 · 21/04/2021 18:08

@Kellyd79 really sorry to hear you’re going through this. My understanding is the NIPT is more accurate in higher risk populations. Hence in the context of ultrasound markers etc, a positive result is more likely to be accurate.

How far along are you in the pregnancy? Is the bowel the only marker so far? Xx

Mummy2O · 21/04/2021 18:46

@kellyd79 I am so sorry that this is happening to you. Sending you lots of love.

Kellyd79 · 21/04/2021 18:48

I'm currently 13+5 and they said the only thing they spotted on the scan was the bowel. Brain is fine, heart looked ok, arms and legs looked normal apparently. Nt was 2.2 and baby is growing well. The exomphalos is the only marker. So I guess I'm hoping I had a false positive nipt result

MumOfMiracles · 26/04/2021 21:36

Hi @Kellyd79 How are you getting on lovely lady? Lots of love x

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Kellyd79 · 26/04/2021 21:47

Thank you for asking. I'm struggling. I'm going for the amnio next week but i know what the result will be 😢

MumOfMiracles · 26/04/2021 22:09

Oh Kelly lovey! I honestly know how easy it is to fear the worst, but I am holding on in faith for you that there is good news to come. I can only imagine it is so extremely hard right now so feel free to pm me anytime. We are all here for you as support! What date and time is your amnio next week? Will be keeping you and your sweet baby in my thoughts and prayers xx

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Mummy2O · 26/04/2021 22:40

@kellyd79 I am thinking of you and hoping that all goes well next week.

Kellyd79 · 26/04/2021 22:52

Thank you so much you are so kind! its 10.30am Tuesday. I'm praying that my nipt result was wrong or that its just confined to the placenta but I've read so many stories like mine that turned out to be correct. I'm clinging on to a tiny bit of hope

MumOfMiracles · 27/04/2021 05:56

Here any time you need to reach out. Hopeful the result was wrong too! You are not alone in this lovely, no matter how hard it may be. Keep us posted xx

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MumOfMiracles · 27/04/2021 05:57

How soon do you get the results for amnio? x

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MumOfMiracles · 04/05/2021 07:41

Thinking of you today and praying @Kellyd79 Loads of love xx

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Kellyd79 · 04/05/2021 08:24

Thank you so much. Not gonna lie im scared!

MumOfMiracles · 04/05/2021 08:53

When do you get results back? Hugs and love xx

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MumOfMiracles · 04/05/2021 08:54

All here for you lovely lady, understandable to be feeling scared, you are not alone in this. xx

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TheSandman · 04/05/2021 09:02

When my wife was pregnant with number three we were told exactly this and I so understand. We talked and decided that no matter what it was a baby, and our child and we would love it. We didn't go for the amnio.
He's 12 now. A pain in the arse and the untidiest human on the planet but an average kid with no congenital problems - apart from having me as a dad.

Kellyd79 · 04/05/2021 09:13

@TheSandman thats good to hear. All kids are messy aren't they? I have 2 messy teens!
@MumOfMiracles I was told id hear by Friday but some people say it can take 2 days, so I'll be phone watching from Thursday. I'm convinced it'll come back as positive for t18 so I'll be upset but not that shocked. In fact I'll be shocked if its clear 😄

Kellyd79 · 04/05/2021 09:27

@MumOfMiracles is it your 20 week scan today? Good luck i bet you can't wait to see her again ☺

MumOfMiracles · 04/05/2021 10:10

Yep it's at 10.40. x

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MumOfMiracles · 04/05/2021 10:11

Hoping with all hope results come back okay for you guys. 🙏

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MumOfMiracles · 04/05/2021 13:28

Hi @Kellyd79, how did it go? Lots of love to you xx

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Kellyd79 · 04/05/2021 13:37

@MumOfMiracles how was your scan? All good I hope?
So I went for the amnio but they couldn't do it as the placenta was in the way 😫 this means I have to go back in 2 weeks! She did a detailed scan though and I'm right on track at 15 weeks 4 days, heart looked fine, brain looked fine, skull was normal shape, amniotic fluid normal amount, hands were wide open and baby was waving at us! She even told us exomphalos is still there but she believes it now contains part of the liver aswell as the bowel. I asked if they thought baby is healthy just by looking but they refused to give me any hope. However the midwife who saw us out did say to keep the hope as she's seen a few with confined placental mosaicism. I'm upset I still don't have a trisomy 18 diagnosis but hopeful that baby looks healthy so far although I know markers dont always show until later.

MumOfMiracles · 04/05/2021 14:09

Hopeful for you lovely that you will continue to get good news! Yes all was okay with baby girl, bless her! Just need to go back next week to get spine measured as she wouldn't let them have it. Little monkey! 😘

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Kellyd79 · 04/05/2021 14:46

Aww how typical haha. We asked for a photo today but she wouldn't stay still so couldn't get a very good one! They do know how to keep us on our toes dont they? 😆

Tangledtresses · 04/05/2021 15:22

I had high risk at age 42, had the harmony and it was a 1 in 150000 chance
Nhs had given me 1/14 chance!

He's 7 now and very healthy

MumOfMiracles · 04/05/2021 15:36

They sure do! 😘🥰 Aww hope you get a pic next time lovely!

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