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Original poster

1/6 chance of Down syndrome baby

27 replies

Tyler2015 · 07/03/2023 19:40

So I agreed to the combined tests at my 12 week scan on Friday and I've had the dreaded phone call today saying I'm high risk for having a Down syndrome baby with a 1/6 chance.
I've agreed to have a NIPT tomorrow and i am dreading the wait for the results.
Should I be worried?

OP posts:
Namechangestimes100 · 07/03/2023 19:51

1/6 sounds super high doesn’t it? But when you break it down that still means 5/6 that your baby doesn’t have DS, 5/6 is roughly 83% chance, so the odd say that baby probably doesn’t. Especially the nhs screening isn’t the most accurate and takes into account the NT measurement (also not accurate and maternal age) amongst a few other things to calculate a probability.

how far a long were you? I had similar but I was only 10+3 and the consultant they referred me to said the NT measurement isn’t accurate before 11 weeks

Original poster
Tyler2015 · 07/03/2023 20:04

Namechangestimes100 · 07/03/2023 19:51

1/6 sounds super high doesn’t it? But when you break it down that still means 5/6 that your baby doesn’t have DS, 5/6 is roughly 83% chance, so the odd say that baby probably doesn’t. Especially the nhs screening isn’t the most accurate and takes into account the NT measurement (also not accurate and maternal age) amongst a few other things to calculate a probability.

how far a long were you? I had similar but I was only 10+3 and the consultant they referred me to said the NT measurement isn’t accurate before 11 weeks

It really is, we're so worried. 83% gives me so much hope I just hope the NIPT comes back low risk.
I was 13 weeks exactly when I had the combined test and the NT measured 2mm

OP posts:
Namechangestimes100 · 07/03/2023 20:09

Tyler2015 · 07/03/2023 20:04

It really is, we're so worried. 83% gives me so much hope I just hope the NIPT comes back low risk.
I was 13 weeks exactly when I had the combined test and the NT measured 2mm

Show quote history

ok, so it could maybe be age that’s making the risk factor increase. I say, put a pin in it, take a deep breath. The odds are in your favour. NIPT will give you a clearer picture and next steps. Could you see a nasal bone on the scan? A lack of nasal bone is a soft marker for ds.

Tyler2015 · 07/03/2023 20:16

This reply has been withdrawn

This message has been withdrawn at the poster's request

crhendy · 07/03/2023 20:19

My friend had the same odds. She spent the wait time between scans discussing options with her husband and understanding more about Down’s syndrome. I think that helped them because they made peace with their decision to continue with the pregnancy regardless. Of course, the baby turned out to be completely fine!! But I really admired how they coped with it.

Really hope you have a supportive partner or network who can be there for you no matter what!

Original poster
Tyler2015 · 07/03/2023 20:24

crhendy · 07/03/2023 20:19

My friend had the same odds. She spent the wait time between scans discussing options with her husband and understanding more about Down’s syndrome. I think that helped them because they made peace with their decision to continue with the pregnancy regardless. Of course, the baby turned out to be completely fine!! But I really admired how they coped with it.

Really hope you have a supportive partner or network who can be there for you no matter what!

So glad everything turned out fine for your friend it's good to hear some positive stories in similar situations.
Yes I have a supportive partner and family thankfully thank you.

OP posts:
Namechangestimes100 · 07/03/2023 20:36

So I’m not a dr but I think I see a nasal bone there!

Original poster
Tyler2015 · 07/03/2023 21:04

Namechangestimes100 · 07/03/2023 20:36

So I’m not a dr but I think I see a nasal bone there!

😂 it actually goes without saying on this scan to be honest

OP posts:
Hi1986 · 19/04/2023 09:01

@Tyler2015 hope your results were ok 🙏🏻
I am currently going through the same thing, been told baby has 1 in 5 chance of Down Syndrome and awaiting NIPT results. I’m heartbroken and don’t think I’ve ever cried so much. Can I ask how long it took for your results to come through please? The waiting is agonising. Xx

Original poster
Tyler2015 · 19/04/2023 09:06

Hi1986 · 19/04/2023 09:01

@Tyler2015 hope your results were ok 🙏🏻
I am currently going through the same thing, been told baby has 1 in 5 chance of Down Syndrome and awaiting NIPT results. I’m heartbroken and don’t think I’ve ever cried so much. Can I ask how long it took for your results to come through please? The waiting is agonising. Xx

Thank you, all turned out well for us. The NIPT came back low risk. The results came back about a week later. Honestly I wish I never panicked so much but I was exactly the same as you. Try not to stress because it can be for nothing at all. Xx

OP posts:
Shinea · 19/04/2023 09:08

My NT scans were normal being adjusted 1:6284 risk which is very low risk at 13w, however today at Anomaly scan at 21w we could see bent little finger on left hand side also swollen kidney with urine block which are soft marker for Down syndrome 😭😭
I have taken NIPT Scan and waiting for results! I have been told I will have to wait 2 weeks for the results

What are the odds of DS with above soft markers!!

Namechangestimes100 · 20/04/2023 12:36

Shinea · 19/04/2023 09:08

My NT scans were normal being adjusted 1:6284 risk which is very low risk at 13w, however today at Anomaly scan at 21w we could see bent little finger on left hand side also swollen kidney with urine block which are soft marker for Down syndrome 😭😭
I have taken NIPT Scan and waiting for results! I have been told I will have to wait 2 weeks for the results

What are the odds of DS with above soft markers!!

Soft markers are just that, soft markers, things that are commonly seen in children ITU DS on scan but it’s not a diagnostic criteria. A bent little finger can be perfectly normal, Hailey Bieber has it :) xx

Shinea · 28/04/2023 08:04

Update: NIPT tests came back negative/low risk finally relieved 🙏🙏 hope RPD decreases too

yarnmum · 23/08/2023 16:16

Hi, just thought I would share my experience. I have 4 children already, my eldest being 20! I am having a surprise pregnancy at 42 years old. We were given the NHS screening test which came back at 1:18 and NF was 2.99 mm.

I refused amnio due to risk of miscarriage and opted for NIPT instead Came back as high risk. I have researched and researched and researched and accepted baby will have DS. We are under care of fetal medicine and baby is doing fabulous. Currently 30 weeks. I experienced fear, anxiety, cried lots etc at first but have now accepted it and am actually excited. She is just a baby at the end of the day and will just be a different journey with this one. I am determined to make it work and for her to have a full and happy life xxx

Staceypalmer · 05/09/2023 20:47

Hey so I’m now going through this exact same thing. Had my scan on Friday at the fluid on babies neck was 4mm when there concern is over 3.5mm so I had the blood test and got that phone call today to say there is high risk, I’m having the NIPT test result tomorrow and she told me it’s 1 in 6 chance of baby having downs and 1 in 27 of baby having edwards syndrome. She told me the results could take up to 2 weeks and I haven’t got another scan until the 18th September which feels like she’s and they will do checks again on baby 😩I’m literally just thinking the worse that I will be that 1 person and because the neck fluid is above it is very likely 😩how can u tell from a scan if there is a nasal bridge?

Staceypalmer · 05/09/2023 20:50

I had that dreaded phone call today to say my bloods came back as high risk so having the NIPT blood test tomorrow which I’m still feeling negative about. I’ve spend the whole day today crying and just thinking the worse that their is 1 in 6 chances and I bet I will end up being that 1 😩the fluid on babies neck from the scan was 4mm and they like it to be below 3.5mm for it to be classed as normal so it’s very likely baby has got it. Xx

Original poster
Tyler2015 · 05/09/2023 23:52

Staceypalmer · 05/09/2023 20:50

I had that dreaded phone call today to say my bloods came back as high risk so having the NIPT blood test tomorrow which I’m still feeling negative about. I’ve spend the whole day today crying and just thinking the worse that their is 1 in 6 chances and I bet I will end up being that 1 😩the fluid on babies neck from the scan was 4mm and they like it to be below 3.5mm for it to be classed as normal so it’s very likely baby has got it. Xx

Aw I know how worrying this is but honestly there is still a chance that's not that case. I also think so negative. I wish you all the best 🤞. My baby is here now I got diabetes which was another scare to follow. So stressful. Xx

OP posts:
Original poster
Tyler2015 · 05/09/2023 23:53

I have no idea how to tell on a scan either sorry xx

OP posts:
CRbear · 06/09/2023 07:46

@yarnmum - wonderful that you have found peace with your decision, but it’s not true that there’s increased risk of miscarriage from amniocentesis (or CVS). That research has been largely debunked - they had not accounted for the fact those having these tests tended to have increased risk of miscarriage for other reasons (typically why they were having the tests). Just in case anyone reading this thread is considering these tests.

yarnmum · 06/09/2023 20:29

CRbear · 06/09/2023 07:46

@yarnmum - wonderful that you have found peace with your decision, but it’s not true that there’s increased risk of miscarriage from amniocentesis (or CVS). That research has been largely debunked - they had not accounted for the fact those having these tests tended to have increased risk of miscarriage for other reasons (typically why they were having the tests). Just in case anyone reading this thread is considering these tests.

This is what I was informed by a medical professional so ......... I took their professional medical opinion into account when making my own personal decision along with my medical history and complications

CRbear · 07/09/2023 13:22

Exactly. I only want to encourage that others who come to this thread looking for support do the same rather than believe the blanket statement - which is often said - that CVS/Amnio increases risk of miscarriage.

yarnmum · 08/09/2023 08:11

But it does. It is even on the NHS website. No disrespect but I really think pregnant mummies should be aware of all the facts and take note of what medical professionals say , especially as advised this is the case by the NHS, rather than an anonymous poster on here with no medical training at all

Mummyo1 · 13/09/2023 18:30

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 💔

1/6 chance of Down syndrome baby
Staceysimmo · 14/09/2023 08:07

Hey bless ya I know how you are feeling, I had blood tests that came back high risk then I had the NIPT blood test and it’s still came back high for DS, got another scan tomorrow with fetal medicine so we can then discuss our options but I am heartbroken as this wasn’t what we thought would ever happen after having 2 miscarriages previously as well 😭I haven’t stopped crying since we got the news on Tuesday. I don’t think we will have any further testing and what will be will be but going forward we are preparing ourselves for being parents of a baby with DS. Xx

Mummyo1 · 14/09/2023 08:14

What were your chances if you don't mind me asking?