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Original poster

1 in 2 chance of Edwards or Patau

40 replies

Alwaysanna · 27/12/2024 23:34

Hello I’m looking for anyone in the same position really as it feels quite a lonely place to be right now.
we had our 12 week scan and combined test last week. This is our first baby that’s made it to this point (we have had 2 previous back to back chemical pregnancies this year)
This morning we had a phone call to say I had low Papp-a and 1 in 2 chance of Edwards or pataus. DS was 1 in 540.
The NT test was normal … I think this was 1.2.

we had the NIPT test and now have an agonising 7-14 day wait. I’ve since read online that given our high result that many suggest going straight to cvs/amnio and there is a chance of a false negative on the NIPT.

would there have been any markers on the 12 week scan that could indicate Edwards/pataus?

anyone had the same high result and then NIPT was fine?

thanks for any info/support ☺️

OP posts:
Original poster
Alwaysanna · 02/01/2025 20:40

purplespink · 02/01/2025 17:36

@Alwaysanna I'm praying that the amnio goes your way, I'm so sorry you're in this position.

Thank you 🤞 x

OP posts:
Original poster
Alwaysanna · 02/01/2025 20:41

Wallacewhite · 02/01/2025 14:23

I'm sorry to hear that OP, I hope the amnio goes your way x

Thank you 🤞 x

OP posts:
MrsScotland · 02/01/2025 21:02

If I can answer any questions just let me know x

Original poster
Alwaysanna · 20/01/2025 16:17

I just wanted to come on here and update.
unfortunately our amnio came back positive for Edwards. This has been the longest few weeks of tests and waiting.
I am heartbroken. X

OP posts:
Latenightreader · 20/01/2025 16:24

Oh I am so sorry to read this. My friend whose baby had Edwards had a lot of support from a charity which works with parents after diagnosis, and they were able to help her a lot with the next stages, and time after. Thinking of you.

Rtmhwales · 20/01/2025 16:24

I am so sorry for your loss. We lost a baby in 2021 due to Trisomy 13 (Patau). It was heartbreaking. If it’s any bit reassuring, we went on to have a healthy daughter and I’m 4 months pregnant with another healthy baby. I know after our loss I was terrified history would repeat itself and just hoped someone could reassure me.

Take all the time you can to grieve and mourn the loss of this much love and wanted baby. Thinking of you.

purplespink · 20/01/2025 16:56

@Alwaysanna I'm so sorry, sending you lots of love 💜

Original poster
Alwaysanna · 20/01/2025 17:51

Latenightreader · 20/01/2025 16:24

Oh I am so sorry to read this. My friend whose baby had Edwards had a lot of support from a charity which works with parents after diagnosis, and they were able to help her a lot with the next stages, and time after. Thinking of you.

Thank you.
we have an appointment to speak to the consultant and midwife on Wednesday. the midwife we have dealt with has been amazing and has offered us support from charities x

OP posts:
Original poster
Alwaysanna · 20/01/2025 17:53

Rtmhwales · 20/01/2025 16:24

I am so sorry for your loss. We lost a baby in 2021 due to Trisomy 13 (Patau). It was heartbreaking. If it’s any bit reassuring, we went on to have a healthy daughter and I’m 4 months pregnant with another healthy baby. I know after our loss I was terrified history would repeat itself and just hoped someone could reassure me.

Take all the time you can to grieve and mourn the loss of this much love and wanted baby. Thinking of you.

I have read a lot of stories where people have gone on to have healthy babies afterwards and it really does help hearing this. So thank you.

OP posts:
Original poster
Alwaysanna · 20/01/2025 17:53

purplespink · 20/01/2025 16:56

@Alwaysanna I'm so sorry, sending you lots of love 💜

Thank you 💖

OP posts:
JamesWebbSpaceTelescope · 20/01/2025 18:16

I am so sorry that you have had such devastating news and a tough few weeks ahead.

Notgivenuphope · 20/01/2025 18:23

How horribly sad OP. We were all hoping and praying for the opposite. I hope you have kind midwives and good RL support to get you and your partner through the next steps. Be kind to yourselves.

Peanutbutterjelly123 · 20/01/2025 18:33

@Alwaysanna

didn’t want to read and run. I hope you’re okay and get the support you need.
we recently lost our boy at 35 weeks and have had a lot of charities signposted if you want/need any of these passing on.
My inbox is always open if you need/want to talk ❤️

SleepingStandingUp · 20/01/2025 19:00

I'm so sorry OP, like others have said there's every reason to believe you will have healthy children in the future. I'm on a Facebook group for parents of children with Edwards and Patau as DS has a mosaic condition of one of those. Where there are minimal physical anomalies, there are babies who survive into childhood but it's obviously an immensely personal choice on what you do next. Whatever choice you make will be the right one because there's isn't a wrong one of you do what is right for you x

anonny55 · 21/01/2025 01:34

@Alwaysanna so sorry to hear this update, sending love🤍

@Peanutbutterjelly123
Please may I ask what happened with your little boy if you don't mind sharing? So sorry for the loss of your darling baby😢🩵

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