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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:
Theroom · 14/09/2023 18:41

My sister had a worse probability than you and she was anxious for her entire pregnancy. The baby was fine.

I opted to do no Downs screening to avoid her situation. I already knew I'd be told I'd be high risk due to my age. I also didn't want NIPT as I've also read horror stories regarding people being told their baby have obscure defects and it turned out to be incorrect (I believe the error margin for rare trisonomies etc is large)

HeadAgainstWall0923 · 14/09/2023 19:00

Hi OP,

I just wanted to come and offer you a hand hold.

Me and my husband didn’t have to go through what you are as my bloods were fine, but we’d always said that if any results came back to show the baby had a severe disability or they had any chromosomal conditions then we wouldn’t have continued with the pregnancy. So I can empathise with you when it comes to navigating those complex and difficult thoughts and emotions.

The next week or so is probably going to be awful for you with all the waiting but I sincerely hope you get the result you want x

KatieJ345 · 14/09/2023 19:16

Like other posters have said, it is still a low chance of your baby having DS so I would try not to worry until you get more news, though I appreciate that is easier said than done! Fingers crossed everything works out for you.

Spoonmoon · 14/09/2023 19:32

I had a very large NT measurement (6.9) low Papp A, and a range of other issues. 1/8 for downs and 1/12 for the other trisomy’s. Due to the huge NT we had the CVS for a full genetic screening as well as a lot of other tests. Baby now 16 months and meeting all milestones… no DS or other issues.
https://www.arc-uk.org/ are amazing and can provide support.
all my love to you and your partner. Realising something could be wrong with your much wanted pregnancy is hell. ♥️

Antenatal Results and Choices (ARC) – non-directive information and support before, during and after antenatal screening

https://www.arc-uk.org/

jolaylasofia · 14/09/2023 19:33

i never even had screening bloods. I just know i woudnt have terminated so there was absolutely no point. I really hope everything comes back fine for you. But children that live with down's syndrome can live very full and amazing lives.

Spoonmoon · 14/09/2023 19:37

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

User69611 · 14/09/2023 19:38

Hi OP. So sad to read this and thinking of you, it is such a horrible waiting time, such agony. Sadly went through it myself a few months ago but had a high NT as well as bloods and a 'greater than 1 in 2' chance. Diagnosis of DS was confirmed by CVS and for a number of personal reasons we terminated the pregnancy. Absolutely awful time and decision to have to make, and I really hope you don't have to face that. But, unlike a few posters on this thread, everyone I know was extremely supportive rather than judgemental. (Also absolutely huge respect to those who parent a DS child if reading this).
Anyway your much odds are better, so hopefully you will not have to face something similar, sending much love <3

Original poster
Mummyo1 · 14/09/2023 19:40

@Spoonmoon who are you talking to?

OP posts:
Original poster
Mummyo1 · 14/09/2023 19:42

@User69611 I'm so sorry you went through that x

OP posts:
Vallmo47 · 14/09/2023 19:55

Sorry OP I can’t answer any questions as I don’t know and don’t want to mislead you by guessing. ♥️

Spoonmoon · 14/09/2023 19:55

jolaylasofia, however I realised I’m just feeding the need for attention so edited. Some people have been unpleasant.
I really hope you are doing ok and have support in real life. ARC have a counselling line which is amazing I really recommend calling xx

Sunshineclouds11 · 14/09/2023 20:10

I hope you are ok.
Sending love❤️

supersonicginandtonic · 14/09/2023 20:30

Oh @User69611 I'm so sorry you went through what you did. My sister had a termination due to edwards syndrome and she did find that people were supportive. Nobody should ever judge anybody int his situation.

Original poster
Mummyo1 · 14/09/2023 20:31

I personally think its awful people judge. As If that decision isn't hard enough

OP posts:
squareyedannie · 14/09/2023 20:35

@Mummyo1
It's a very emotive subject, People who know or have a child with DS are going to be upset at first as the rights of a fetus with DS are still being debated
I think what is most important is making an informed decision.

fairyfluf · 14/09/2023 20:50

viktoria · 13/09/2023 21:11

Mine was 1 in 32.
My daughter did not have Down syndrome. My friend who was due the same day had a 1 in 3500 chance and her daughter has Down syndrome.

All the best for tomorrow and for the days after waiting for the result. Try and do something nice to take your mind of things.

I can't remember which time frame I was given, but I received a phone call with the test results quite a few days earlier than I expected.

And finally, I'm not sure what your thoughts are if your baby has downs. I didn't know if I would have had a termination.
This might be a bit dark, but around the time I was given the 1 in 32 chance, my friend's teenage son committed suicide.

Having a baby is a leap of faith. There are so many things that can go wrong. I think I would much rather have a child with Downs than a child who commits suicide, not that that is obviously a choice.
Downs is one of the few things that can be tested for. Doesn't mean that it's the worst that can happen. Sorry that sounds really negative - it isn't meant to be.
In any case, I wish you all the very best Stay positive

The term "commit" suicide is thought by many to be offensive

fairyfluf · 14/09/2023 20:53

I hope it all goes well for you OP

Winnipeggy · 14/09/2023 21:21

Do they give you a higher risk in the combined test simply because of your age? Is that right? I understand the risks increase but this doesn't seem very scientific. I imagine it causes an awful lot of anxiety

Original poster
Mummyo1 · 14/09/2023 21:27

@Winnipeggy I wouldn't have thought so, I'm only 28. I'm wondering if they consider weight...as I have an increased bmi. I'm reminded a lot. I wondering with my bmi, higher hcg (they said around 3× higher) and low papp a is that all that's making my odds 6.25% chance? Would a lower weight make a difference? She also said Hugh hcg and low papp a can be normal. I'm taking 150mg aspirin now as recommended also

OP posts:
Blondeshavemorefun · 14/09/2023 22:52

My niece has Down syndrome - she is such a sweet loving girl thi has strops as all 8yr do 😂 and my 6yr loves seeing and playing with her

I hope you get the all
Clear but having a child's with downs isn't the end of the world

Goldencup · 15/09/2023 01:44

supersonicginandtonic · 14/09/2023 20:30

Oh @User69611 I'm so sorry you went through what you did. My sister had a termination due to edwards syndrome and she did find that people were supportive. Nobody should ever judge anybody int his situation.

Edwards is entirely different the 2 should not be compared.

Brightandshining · 15/09/2023 02:26

My daughter was given a high risk of downs by the NHS so I had the NIPT done which came back very low risk. She was born healthy, no downs.
Im pregnant now. This time I paid for the NIPT before I even had any NHS testing because I couldn't go through that wait again. NIPT came back low risk again.
I am overweight and an older mother which I do think the NHS factor in when doing these risks. Best just to go straight for the genetic testing to get the most accurate picture of what is going on without them basing it off your weight and age.

SpidersAreShitheads · 15/09/2023 03:35

Mummyo1 · 14/09/2023 20:31

I personally think its awful people judge. As If that decision isn't hard enough

The thing is, some other people will think your views on a DS baby are "awful" too.

I'm not trying to be unkind in the slightest as I understand what a difficult time this is for you. The trouble is, this is an incredibly emotive subject.

There are lots of us who know and love people with DS - and it's really hard to read posts that are so dismissive of a DS baby. Not just yours, but some others on this thread.

There is a LOT of misinformation out there about DS. And that's frustrating too for those of us who have to listen to inaccurate information being spread constantly. And of course, it makes us fiercely defensive of our family members/friends who have Down syndrome.

I'm not commenting to try and persuade you about DS. Everyone must make their own decisions. And genuinely, I don't judge because we're all different. I guess my only wish is that people would decide based on facts rather than just hearsay and half-truths, but we're a very long way from that unfortunately.

I have two disabled DC, one with very high needs. It's not an easy life. So please don't think I'm unsympathetic. We all hope our babies will be healthy and well, and it's upsetting to think they may have health problems.

I know you're caught up in the emotion of your situation, and understandably so. I just wanted to try and explain why some people find such harsh views difficult to read. They may have opened this thread to try and provide some support , only to find a baby with potential DS being just written off - and they may be struggling with that because of their personal circumstances.

It sounds as if there's a very good chance that your baby won't have DS, so I'll keep my fingers crossed for you.

Original poster
Mummyo1 · 15/09/2023 06:50

@SpidersAreShitheads why are people who are offended coming on the thread in the first place? I won't ever be sorry for my feelings on it.

OP posts: