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Pregnancy

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

Original poster

1 in 16 chance of downs syndrome

225 replies

Mummyo1 · 13/09/2023 18:35

I've spent hours crying. I've had the call to say my scan was normal, babies fluid on the neck came back as normal but my blood tests showed high hcg and low papp a. I'm low risk for Edwards and patau syndrome but high for downs syndrome 1 in 16. I've got a nipt tomorrow. Anyone else similar and be okay? I'm heartbroken 💔

1 in 16 chance of downs syndrome
OP posts:
CrazyCatMom · 13/09/2023 18:39

A 1 in 16 chance of Down syndrome is a 6.25% chance.

So that’s a 93.75% chance that your baby won’t have Downs. I don’t think there is anything anyone can say that will stop you worrying but I would suggest reaching out to your trust’s screening midwife in the meantime - they should be able to offer lots of support x

CrazyCatMom · 13/09/2023 18:40

(PS I have a friend who was given a 1 in 2 chance of Down syndrome and opted not to have any further screening - her little girl was born perfectly healthy and without Down syndrome)

Original poster
Mummyo1 · 13/09/2023 18:41

Thank you for your support I appreciate it. The only thing making me feel better is my scan was normal, and the fluid on the neck was normal, I'm praying my nipt is OK x

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Jeffreybubblesbombom · 13/09/2023 18:42

I was age 35 . Had a 1 in 5 chance.
Didn't phase me. Had two friends with the most amazing DS kids.
My daughter wasn't.

Original poster
Mummyo1 · 13/09/2023 18:43

I'm really glad you were okay and your baby is fine, but it will be heartbreaking for me x

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AlexaCanYouHearMe · 13/09/2023 18:45

I am really sorry @Mummyo1 I have to say that would be too high a chance for me, and I wouldn't risk it. Hope you are OK, and everything comes back in your favour. Flowers

Nowanextraone · 13/09/2023 18:46

Oh you poor love, I've been where you are and it feels beyond awful.
My risk was similar to yours, and my daughter did not have DS 🙂 Like the other poster said, it's still actually a low risk but we are used to hearing about 1 in 3500 etc!

Weirdly with my next baby my risk went back up (or is that down?!) to 1 in 2500!

Please hang on in there, it is most likely absolutely fine x

AperolWhore · 13/09/2023 18:46

I’d pay for the Nipt test and go from there x

Original poster
Mummyo1 · 13/09/2023 18:47

My nipt test is being done for free on the nhs tomorrow x

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SummerHouse · 13/09/2023 18:56

I have been in this kind of situation. It's hell. I was sobbing on the kitchen floor making deals with god (I am not religious).

I wouldn't wish it on anyone. There was no NIPT at that point (or not that I was offered or knew of). It was amnio or nothing.

For me there was nothing anyone could say to help. Every person who told me their experience just (somewhat bizarrely) made me feel like they had the baby free from Downs, so my odds increased further.

As much as you possibly can, find the positive. Think of all the good things in your life. Go out for a long walk. Hope and prey. Remember those odds of 93.75% are massively in your favour. There's a 93.75% chance that all this worry is for nothing. Whatever happens, you will cope. And whatever happens you will come through this a stronger person.

Original poster
Mummyo1 · 13/09/2023 19:04

Was your baby OK? I've cried and cried. I know the chance is high medically but I need to remember that I have a 93.75% chance of everything being fine I know some people get worse. Do you know with the nipt how you get your results?

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TTCX2 · 13/09/2023 19:07

Hi @Mummyo1. Sorry that you are experiencing this and I can completely empathise. I was a 1 in 17 chance and we opted for the blood test to give us a clearer indication and that came back a lot more positive (and we got to know the gender!). I had low Pap-a levels as well and my daughter was born early and small but absolutely perfect and she didn’t have DS xx

Original poster
Mummyo1 · 13/09/2023 19:08

@TTCX2 did you have low papp a along side high hcg? I'm terrified. Are the results emailed? It's great we can find out gender as I'm impatient! I'm trying so hard to think positively xx

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GraciousB · 13/09/2023 19:10

I got similar results to you with my last pregnancy - about 1 in 23 (very high beta HCG and lowish pappa). I did the NIPT and it came back clear and I have a healthy 18 month old. I was a complete mess, so I totally get how you- I never truly relaxed until a few weeks after she arrives tbh. Understand that it's most likely that your baby doesnt have DS, and try to be kind to yourself, this has probably been a really big shock for you.

newmama311 · 13/09/2023 19:10

Try to think positively, and the high likelihood is all will be well. Hope all goes okay

Original poster
Mummyo1 · 13/09/2023 19:11

@GraciousB I'm heartbroken. A few have said they probably just want to be safe! The good thing is that my scan was normal..
Nothing was detected it just my bloods

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menopausalbloat · 13/09/2023 19:13

My chances were high and yes, my gorgeous daughter did have DS.
Believe me when I say, she's the best thing that has ever happened in my life and is perfectly healthy.
Please, if you have an amnio and they confirm it, find out as much as you can before considering your options.

Original poster
Mummyo1 · 13/09/2023 19:17

@menopausalbloat were your chances as high as mine if you don't mind me asking? I already have a sen child, it took us a year to conceive this baby and we were so delighted, we were being referred for fertility treatment so we were over the moon it happened naturally

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Lovemusic82 · 13/09/2023 19:21

As others have said…there a very high chance you dc won’t have DS, I understand why you feel your would be devastated if your baby has DS but as a parent of a child with disabilities that can’t be detected on a scan or on any test I could not be devastated at a DS diagnosis, there are many other things a child could have that can not be diagnosed before birth.

I hope all the tests go well and your baby gets the all clear so you can continue to enjoy your pregnancy.

menopausalbloat · 13/09/2023 19:24

@Mummyo1
Not not that high, I can't remember the actual ratio, sorry.
Try not to panic until you're absolutely certain. I know how hard that is.
I cried for months afterwards and looking back, I just wish I'd known what I know now.
If your child does have DS, you'll make the right decision for you.
Just make sure your choice is an informed one.

Original poster
Mummyo1 · 13/09/2023 19:26

@menopausalbloat i know I have a 93.75% chance baby doesn't but its so hard in the mean time. I've seen lots get a clear nipt and I'm trying to be positive. Did your scan show any fluid on the neck?

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menopausalbloat · 13/09/2023 19:28

No, no fluid.
Shorter limbs though. I know of a lot of people who have had a high-risk blood test and their baby didn't have DS.

Original poster
Mummyo1 · 13/09/2023 19:30

@menopausalbloat nothing has been flagged at all on my scan just the bloods so I'm hoping that's good, that makes me feel better! Thank you

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menopausalbloat · 13/09/2023 19:30

There's probably nothing anyone can say to put your mind at rest right now.
You'll end up getting more anxious if you try and research online.

Original poster
Mummyo1 · 13/09/2023 19:31

@menopausalbloat yeah im not doing that just looking on here for people similar, I never even expected it and never had it with my son

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