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Original poster

1/24 risk of down syndrome, worried sick

80 replies

rebecca24y · 01/02/2024 10:00

Hi i'm wondering if anyone can give me some positive stories

after my 12 week scan last week i got a call to say i had 1/24 chance of my baby having down syndrome and i've been an emotional wreck ever since! i feel like i'm falling into some sort of depression, i feel like i'm no longer excited about my pregnancy i'm just so scared and worried.

i had the NIPT test on Tuesday and now waiting for my results which is killing me.

my results are

NT: 3.2 (which i don't think is alarming but on the higher end?)
HCG: 1.81 MoM
PAPP-A: 0.83 MoM

has anyone had similar results?

OP posts:
Original poster
rebecca24y · 05/02/2024 11:02

@ElsaMars it's honestly been the worst week of my life i've never felt worry like it! thank you for responding x

OP posts:
Kate543 · 05/02/2024 11:09

Hopefully you will get your results through soon, I have been thinking about you. I know I said this further up but if you do want to chat to someone who has been through it I’m all ears. Even though I found out when she was born that my daughter had Down syndrome, everyone I have met through support groups all go through a sort of mourning period for the child you were expecting to have. I went through a real period of sadness and worry about the future, which I am personally out the other side of. I’m not going to weigh in on the whole Down syndrome babies are perfect/ the very negative posts on here because as with everything it’s a lot more complicated than that. Although I can assure you I do not regret my daughter and would not change her for anything (and I am fairly sure I don’t look older than I am 😂). There are a lot of unknowns and children with Down syndrome are just like any other children in that they are all different! We were unfortunate and our daughter had a lot of health complications early on including very scary open heart surgery but we are so lucky as she is now doing really well and is the most chilled out child you will ever meet!
It’s hard to not be biased but I am not posting this to sound judgey of people who might make the decision not to bring a child with a known disability into the world, all choices are valid. I just wanted to weigh in with the middle ground from someone who knows first hand the realities, good bad and the ugly!

it is perfectly fine to feel so overwhelmed by the news and I really just want to send you a hand hold! Look after yourself x

Original poster
rebecca24y · 05/02/2024 11:17

@Kate543 thank you so much for your words of support xx

OP posts:
Disturbia81 · 05/02/2024 11:46

MariaLuna · 04/02/2024 22:42

I wouldn't.

My friend has the worst kind of child with DS. I know that sounds horrible. I didn't know there were different "grades" of it.

He's an adult (40's), can't speak or go to the toilet. He's still in nappies.

She's early 70's, had a heart attack (from stress, obviously, her husband died of cancer too) so now he has to go into a care home, he's screaming blue murder.

He's a huge guy too, almost crushed me to death giving me a hug when visiting.
Just his way of welcoming me.

I love her and him to bits. Wouldn't wish that on anyone.

I'm sorry if I've upset you OP. Just relating the reality of what could be.

There is absolutely nothing wrong with this post OP, it's the reality for many.
The positive stories are also reality.
It's good to have a balance

Original poster
rebecca24y · 05/02/2024 14:49

UPDATE: my results all came back low risk I’m in so much shock right now I can’t believe it! Thank you so much to everybody on this thread who has helped me get through a really awful week xx

OP posts:
TheShellBeach · 05/02/2024 14:57

That's lovely news, OP!

DragonFly98 · 05/02/2024 15:25

holycrabsticks · 03/02/2024 10:13

@arlequin you've been told it's not helpful. Drop it.

What a horrible thing to say.

Mischance · 05/02/2024 15:44

Would you bet on a horse that had a 1 in 24 chance of winning?

This is really a low risk, and, as others have evidenced, most of the time the baby does not have DS.

My DD was in this situation and chose not to have further tests as she was clear she would not terminate in any event, so it was pointless. The baby was fine.

Unsainted8 · 05/02/2024 16:00

Amazing news, OP ❤️

Thelionroars · 05/02/2024 16:32

Am so happy for you op. Take a deep breath and enjoy the rest of your pregnancy ❤x

Kate543 · 05/02/2024 16:58

I hope the rest of your pregnancy is lovely x

Emsmith87 · 05/02/2024 18:34

Over the moon for you xxx

Itonlytakesaminute · 05/02/2024 22:17

Enjoy the rest of your pregnancy now OP

Mischance · 05/02/2024 22:34

Just seen the good news!

Sometimes tests like this just cause so much anxiety.

AimeeLou84 · 08/02/2024 19:58

Happy for you OP. I’m currently waiting on mine and going out of my mind so I can relate to this a lot x

Emsmith87 · 09/02/2024 08:54

Got my NIPT results back yesterday and thank the lord mine came back low risk too. What an horrible week it has been.

Aimee sending you lots of love. I know the wait is torture.

Xxxx

AimeeLou84 · 09/02/2024 08:57

Thanks Em. Im praying for a call today but im so nervous. I had test Tuesday AM. When did you have yours? Xx

Emsmith87 · 09/02/2024 12:05

I had mine last Thursday and it got to London on Friday. Technically the results were back on Wednesday evening but no body was at the hospital until Thursday morning. It truly is hell. What were your readings do you know. Got everything crossed for you and pray you get the results asap xxx

AimeeLou84 · 09/02/2024 12:11

I just called them and still not back she said won’t be today now. Couldn’t help but breakdown yet again. Was 1 in 133 due to age then my bloods moved it to 1 in 137. And I know people say look at it percentage wise but someone has to be that 1. I’m so scared x

KnickerlessParsons · 09/02/2024 12:18

someone has to be that 1 in 24

That's not true. The odds are different for everyone, for every pregnancy.

Downs doesn't affect 1 in 24 babies that are born.

For this particular pregancy, for this particular woman, there's a 4% chance the baby might have Downs. It doesn't mean that 4% of the babies born on that day will have Downs, and that hers might be one of them.

Abhiteju · 21/03/2024 04:23

Im 1 in 90 chance of Down syndrome i have given my nipt on march 8 and still waiting i have been through so many positive stories but i an worried much someone could help me with this thank you

AimeeLou84 · 21/03/2024 07:54

Abhiteju · 21/03/2024 04:23

Im 1 in 90 chance of Down syndrome i have given my nipt on march 8 and still waiting i have been through so many positive stories but i an worried much someone could help me with this thank you

Edited

Thinking of you, I know exactly how hard it is. You should get your results by Friday as they say up to 2 weeks. It’s an awful wait but what I can say is I read loads of stories of people having 1 in 2 chance and coming back all good. What put you at a 1 in 90 chance? X

Abhiteju · 21/03/2024 11:50

Im really very scared waiting is really though thanks
did you get your results and how was your results

AimeeLou84 · 21/03/2024 12:52

Abhiteju · 21/03/2024 11:50

Im really very scared waiting is really though thanks
did you get your results and how was your results

Yes it is a horrible wait, mine come back within a week as low risk. My hospital doesn’t tell you the chances within a number if it’s low risk. Have you chased them up for your results?

Abhiteju · 21/03/2024 15:31

Yeah i went back yesterday they said they haven’t received yet they said they will call as they get them