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Pregnancy

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

Original poster

High Risk NIPT test

18 replies

Sheen4 · 07/12/2022 18:22

Hi everyone!

I am just wondering if anyone else has been through similar and what your outcomes were?

I had a 1 in 5 result for Down syndrome on my initial scan and blood work. I’ve had a further NIPT test come back high risk as well so I now have an amnio booked in tomorrow to find out for definite but I’m wondering if anyone has received a different result from the amnio?

I’m holding onto a tiny shred of hope the other tests were wrong but just wondered if anyone out there has actually had this happen or if I’m holding on to hope where there is none?

I would love to hear any stories however they turned out if anyone is happy to share.

OP posts:
a13169 · 16/03/2023 17:04

Hi I'm sorry you never got a reply when you posted this. I was just wondering if you don't mind sharing your amnio result? I am in the same situation now - waiting for the CVS result. Preparing for the worst but can't help hoping for the best. I hope things worked out for you Xx

CaribbeanCupcake · 31/07/2023 12:42

What was the outcome for both of you? Just had the call from the hospital to say 1/5 chance of downs and NIPT booked for first thing in the morning. So scared 💔

Original poster
Sheen4 · 31/07/2023 15:49

Hi, I’m so sorry your going through this! Unfortunately my Amnio matched up with the NIPT and baby had DS. You still have an 80% chance the initial tests where wrong so try to hold onto that whilst you wait for the NIPT results. Please don’t do what I did and google everything it doesn’t really help. My thoughts are with you and I’m praying for the best x

OP posts:
Original poster
Sheen4 · 31/07/2023 15:50

Sorry I never saw this I hope you had a better result x

OP posts:
CaribbeanCupcake · 31/07/2023 17:36

@Sheen4 thank you for replying, it's an awful place to be isn't it. I'm sure you made the best choice for you and thinking of you too x

a13169 · 01/08/2023 13:27

Hey our CVS confirmed the NIPT. I think if your NIPT comes back high risk then I would prepare for the worst. But at 1/5 there is still a chance the NIPT will come back low risk. When I was googling ahead of the NIPT I saw loads of women saying they were 1/5, even 1/3, then came back low risk. So for now I would stay positive. But if the NIPT is pretty accurate. Hoping for the best for you Xx

a13169 · 01/08/2023 13:27

@CaribbeanCupcake

CaribbeanCupcake · 01/08/2023 17:32

Thank you @a13169 we didn't end up having the NIPT in the end as the pregnancy started off as twin. Big mix up at the hospital but basically we now have the diagnostic test booked for Monday. At least that is yes or no so will know for sure. Feeling a bit more positive today as they said it was combination of age (38) and low Papp-A but everything else including fluid at back of the neck was normal. 🤞🏼🤞🏼🤞🏼

Original poster
Sheen4 · 01/08/2023 20:36

🤞🏻🤞🏻🤞🏻🤞🏻 I’m keeping everything crossed for you!

OP posts:
CaribbeanCupcake · 02/08/2023 11:16

@Sheen4 thank you lovely. Will let you know the outcome x

Original poster
Sheen4 · 16/08/2023 10:46

Hey, how did your test go? Hoping for the best 🤞🏻

OP posts:
CaribbeanCupcake · 16/08/2023 15:21

Hiya, so we couldn't have the NIPT in the end as the pregnancy started as a twin 😞 so they booked for a CVS the following week but they couldn't do that as baby was in front of the placenta. So they booked and did an amino last Friday and we have just got the call to say baby is fine and doesn't not have any of the 3 conditions.
I am so relieved- it's been the worst couple of weeks ever 😣

Original poster
Sheen4 · 16/08/2023 18:30

Omg what a whirlwind as if you needed all those extra issues to deal with whilst you were already so stressed out I can’t even imagine! I’m so glad to hear it was good news after all of that ❤️ now just to keep them safe and warm so they can grow! I hope the rest of your pregnancy is uneventful you certainly deserve it! X

OP posts:
CaribbeanCupcake · 16/08/2023 22:06

I know right 🙈 thank you so much, I will do Smile gonna try and relax and enjoy the pregnancy now lol xx

a13169 · 17/08/2023 14:00

@CaribbeanCupcake I'm so happy for you! As soon as you said the pregnancy started as a twin I thought you might be ok but I didn't want to give false hope. When I was researching about NIPTs being wrong it seemed like the only times it came up wrong was when the pregnancy started as a twin and the trisomy samples were coming from the twin that didn't make it. Hopefully the rest of your pregnancy is stress free Xx

CaribbeanCupcake · 17/08/2023 22:06

@a13169 thank you xx I still can't believe it, I feel so so lucky. But a lot calmer today! So glad that is over xx

RuthieeMariee · 17/01/2024 02:01

Hello Everyone, i am 35 now and 17weeks pregnant, my doctor said i am high risk for downsyndrome like 1:206, im done with the NIPT Test and the result still high like 70% the baby is having a down, help me to ease the pain😭, both of our families dont have history of downs. I dont want to proceed with the amnio.

is everyone having like this? Hows your baby when you gave birth?

a13169 · 18/01/2024 09:44

Hi sorry you are going through this. Our CVS confirmed the NIPT result. I think it's almost certain that the baby has downs if the NIPT is positive. We didn't have any history of it in our family either. We had a termination in the end but they confirmed then that the downs diagnosis was correct. I am now pregnant again and we had a CVS and extra testing and so far it looks like everything is ok. Just because it happens once it doesn't mean it would happen again. Sending you lots of positive thoughts

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