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Original poster

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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Vic1991 · 19/09/2021 19:11

I had 1 in 27 chance of my baby having ds and my nt is 2.9 and every thing is normal on my scan I have had the nipt and I am awaiting my results I just want to no had any one had good out come as I am so worried

Mummy2O · 19/09/2021 20:58

@Vic1991 I am sorry you are going through this. It is so hard. I found the maths comforting. The odds are in your favour for a good result. 1 in 27 is a 3.7% chance something is wrong. So, a 96.3% chance that everything is OK.

When are you expecting your results from your NIPT test?

Be kind to yourself and stay strong.

Vic1991 · 19/09/2021 21:08

I had them done Thursday I been going out of my mind thinking I feel like I'm gone be that one in 27 as I always get bad luck but I'm trying to stay positive but it's so hard I'm hoping I get the results back soon

Mummy2O · 19/09/2021 21:38

@Vic1991 It is really hard not to think that way. I totally understand. I coped (to an extent) by trying to keep as busy as possible during the wait. I really hope you hear something soon.

Vic1991 · 19/09/2021 21:44

So do I cause they sent the blood off Thursday but I dunno if they deal with bloods over the weekend so just got to wait I suppose thank you so much for the support nice to speak

Mummy2O · 20/09/2021 22:53

@Vic1991 It was a week before I got the results from mine. I think 7-10 days is standard practice.

Vic1991 · 21/09/2021 03:06

Thank you for the support it mean alot waiting game is frustrating

Mummy2O · 21/09/2021 13:38

@Vic1991 No problem. How are you feeling\coping? x

Vic1991 · 21/09/2021 13:47

I feel worried and on edge but either way I'm having the baby x

Mummy2O · 21/09/2021 14:10

@Vic1991 Sending you love and positive thoughts.

Vic1991 · 21/09/2021 14:16

Thank you so much hopefully I hear from them soon end this week

Vic1991 · 23/09/2021 03:26

Had my results back and my baby is perfectly fine 🥰

Mummy2O · 23/09/2021 14:21

@Vic1991 Oh that is brilliant news!! How are you feeling? x

Ret89 · 11/11/2021 19:19

I'm 14 weeks pregnant and was told I've a 1 in 22 chance of my baby having edwards syndrome...worried sick. How accurate is the screening for this?

Mummy2O · 11/11/2021 21:39

The screening is just an indicator that further testing is likely needed. It is based on a variety of things, including blood results, NT measurement, your age and weight etc. In percentage terms there is a 4.5% chance of your baby having Edwards' syndrome, so the odds are very much in your favour.

Have they talked to you about your next steps at all? Did they give you any cause for concern at your 12 week scan?

How are you feeling? It is a very scary thing to hear.

Ret89 · 11/11/2021 23:44

Thanks for your reply....I had a 13 week scan and NT was 2.1mm and everything looked fine apart from my amniotic fluid looked abit low which has also worried me. I am getting the further blood test tomorrow I'm so scared its just so hard x

Mummy2O · 12/11/2021 06:02

@Ret89 It is a horrible situation to find yourself in. It completely blind sided me. (I had a 1 in 9 chance of Edwards and Patau's and a 1 in 22 chance of DS, but all was fine in the end.)

Have you had a look at the ARC website? It explains your options well. They also have a brilliant helpline if you want to talk it through, which can be really helpful.

Take each day as it comes and try to focus on you and your self care over the next few weeks. This will feel like a roller-coaster of emotions and it is OK to feel the whole mixed bag without any guilt or judgement.

I'll be thinking of you.

Ret89 · 12/11/2021 08:40

I just can't take anymore bad news...I'm also worried about the low fluid x

Mummy2O · 12/11/2021 13:00

@ret89 I hope your tests go OK and you get your results really soon. Sending you love.

Kellyd79 · 13/11/2021 16:50

@Ret89 I was given a 1 in 5 chance of edwards and pataus. I had further testing and my baby had edwards. Your odd are slightly better than mine so there's every chance your baby will be fine. fingers crossed

Ret89 · 22/11/2021 12:06

Got my results back today baby doesn't have Edwards I'm so relieved....just need my low fluid to improve now...I'm still bleeding but not loads I've read alot of women get this and there's no reason.

Mummy2O · 22/11/2021 17:15

Ret89 I am so glad. I hope your low fluid resolves itself soon.

Ret89 · 22/11/2021 17:23

Thank you...can fluid improve? Also I don't think the bleeding is linked as I've had it since 7 weeks

Original poster
MumOfMiracles · 04/12/2021 03:18

Hi @Kellyd79, how are you lovely Mama?

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Kellyd79 · 04/12/2021 09:33

@MumOfMiracles hey, I'm doing ok. My beautiful girl passed away when we were 36 weeks so I didn't get to meet her alive. How are you and your family? X