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Original poster

1:140 risk for Downs Syndrome - sick with worry

26 replies

MollyPea · 08/04/2020 09:46

Hi,

I received a phone call from my antenatal unit yesterday to tell me that I am high-risk for Trisomy 21/Downs at 1 in 140.

I know this is not as high a risk as some, but at 32 I was just not expecting this and I’m really struggling. I’m hoping to hear from others who had similar results to myself and what their outcome was.

My results are as follows:
NT: 2.3mm
hCG: 2.8 MoM
Papp-A: 0.7 MoM

I am anxiously awaiting the results of the Harmony blood test which we opted for via our maternity unit (£250).

OP posts:
Samk79 · 08/04/2020 09:48

Hi @mollypea
I had my screening results back 3 weeks ago as I in 104 for Down's syndrome. I'm 40 so knew I would be higher risk. I opted for the amniocentesis which I had two weeks ago. Thankfully it all came back clear. When I was pg with my son who is now 12 I had a risk of 1 in 120 and again the amniocentesis came back clear.
It's such a worrying time, thinking of you x

AmelieTaylor · 08/04/2020 09:53

I'm sorry you're in this position.

1:140 reads like 'high risk' compared to other odds, but to turn it around...imagine 140 jelly beans in a bowl and having to pick the winning one, you'd think the odds were really stacked against you wouldn't you!

rainbow1982 · 08/04/2020 10:03

Mine was the same risk (I'm 37) but I didn't have any further testing, there's a 139 chance your baby won't be and we personally would continue even if there was downs so we opted not to test. Our 4d scans look totally normal and my nt measurement was the same as yours. Wishing you lots of luck with the results but in the meantime try to keep it thinking it's MUCH more likely your baby won't have DS 🤞😁

Speedqueen2 · 08/04/2020 10:22

Poor you, what a worrying time. I gave birth to a child with Down's when I was exactly your age, with no idea that there was anything wrong until she was a week old. A real shock. For my next child, 2 years later, his nuchal fold indicator came back high, his odds of having Down's came back very similar or a bit higher than yours. We opted to have a CVS test as for many reasons, not least the impact it would have had on our first neurotypical child, we made an active decision not to have a 2nd child with Down's and it came back clear. I think the risk of miscarriage is 1:100 but that might have changed now. As a parent of a now late teen with Down's, I would personally have further tests so that you can make an informed decision. How many weeks are you? Whilst obviously I love my DD unconditionally, and she is lucky enough to be healthy and has done brilliantly, it is a life changer and has a huge ongoing impact on the whole family. If I'd known early on in the pregnancy, I would probably have terminated. I'm not one of those mothers who says I wouldn't change a thing about her. I absolutely would, as I watch her approach adulthood and think of all the things she should be doing that she's not and never will be, and that sadness has never quite left me. Bring on the MN critics! I wish you all the best in your decision.

Liveforholidays · 08/04/2020 12:11

It's such a frightening time as you don't really expect it when the scan looks so good and normal. To give you some hope just before Christmas we were given a1 in 13 chance of downs syndrome. All looked normal on the screen. Nuchal fold of 2.5mm at 13+3 weeks (1.37MoM) so of no concern I was told. My bloods were off : 0.37 papp a, 2.0 hcg. Age of 40 at EDD. I opted for the NIPT as would have had to have waited 2 weeks for the amnio. We decided that if that came back high risk we'd have the amnio. If low risk we'd wait till 20 week scan and if anything was found we'd have amnio then. Thankfully it came back as 'highly unlikely' so decided to cancel the amnio we'd had booked. The risk of miscarriage didn't seem worth it after a low risk NIPT. Hopefully we made the right decision. All scans to date have come back clear (latest scan at 28 weeks). As papp a is low growth is being monitored. Hopefully this puts your mind at ease and helps with the decision making x

Aria2015 · 09/04/2020 19:35

@MollyPea I had a call today to say my risk I 1/110 and I have similar test results to you:

NT: 2.2mm
HCG: 2.44 MoM
PAPP-a: 0.76 MoM

I'm 38 (39 on EDD). It was a shock because although I knew my age might make me high risk, the midwife commented that my NT measurement was good at my scan so I felt fairly relaxed.

Thankfully I had also opted for the harmony test which I had Tuesday so now I'm like you and waiting for the results. I feel sick with worry. I know logically that there's less than a 1% chance of there being something wrong but I've been on the wrong side of pregnancy odds before because I've had 3 miscarriages so it doesn't give me much comfort.

I hope your harmony results give you a positive outcome.

Original poster
MollyPea · 10/04/2020 18:58

Thanks all so much for your kind responses. I found mumsnet really helpful for my own peace of mind, so wanted to update on the Harmony - all clear for us :).

Best of luck Aria, your measurements are quite similar to mine - I reckon you’ll be absolutely fine.

During this process I found out a friend of mine was given 1 in 14 chances of DS and also got an all clear on her Harmony.

Hoping that the NHS brings the NIPT in someday to replace the awful combined. I have lost all faith in it!

OP posts:
Original poster
MollyPea · 10/04/2020 19:01

Ps. DS mums I have the utmost respect. It must be a more wiggly road for you guys than having a chromosomally-normative kid at times.

OP posts:
Aria2015 · 10/04/2020 19:29

@MollyPea that's great news, you must feel so relieved. It's torture waiting for my results. Your news gives me some hope though.

Aria2015 · 17/04/2020 19:09

I got my harmony results back today and they've come back low risk at 1:10,000 and I've found out I'm having a girl! I wanted to update because reading these boards and seeing the outcomes has been keeping me going this last week and hopefully my outcome might be useful to know for someone else going through similar.

Liveforholidays · 17/04/2020 20:03

That's great news. X

RJ3HCS · 23/04/2020 21:27

@MollyPea i am currently in the same situation... just received my results 1 in 98. I am really scared to have an amniocentesis and would much prefer the harmony test. Where did you have this done please? Most places I’ve looked at are charging £500+
Thanks
Also really glad your results came back clear Smile

Aria2015 · 23/04/2020 22:06

@RJ3HCS sorry to hear about your high risk results. I know it's such a scary time. My harmony test was done privately by a consultant at my hospital. It was £480 for the consultation and the test together. Money well spent for me for the peace of mind it gave me when I was given my high risk result. Hope you also have a positive outcome.

Channy1987 · 02/03/2021 03:29

I know this is an old post but its reassured me somewhat! Currently 31 weeks pregnant first trimester results were 1 in 170 I had a 2.3mm nf to though and a 2.835 mom hcg. Haven't had further testing but hoping for the very best outcome at birth!

ThoBerry · 25/03/2021 22:56

@Channy1987 I’m the same as you, I found this old thread and it’s given me some comfort. I’m 13 weeks and just received the phone call today to say I’m higher risk of DS, 1:144, and I have low Papp-a levels. I know the risk isn’t as high as some people have unfortunately had to deal with, but you can’t help but worry. I’ve opted for the NIPT test which you can now get through the NHS, getting that on Monday so fingers crossed. Hope everything turns out ok for you x

Channy1987 · 28/03/2021 03:53

@ThoBerry So sorry to hear you are in the same situation. I have 5 and a half weeks left now so will definitely update this thread with my outcome. Did you get the NIPT?

ThoBerry · 28/03/2021 11:43

@Channy1987 Getting the test tomorrow morning, then an awful 7-10 day wait for the results 😔

MyGhastIsFlabbered · 28/03/2021 12:25

Hi. Just to reassure you (hopefully). With DS2 I was 1:71 so classed as high risk. I had an amnio as I couldn't have waited through the pregnancy. His results came back absolutely normal. He's a very boisterous 8 year old now.

Muchtoomuchtodo · 28/03/2021 12:35

I was 31 when I had ds2. The risk was 1:52.
I opted not to have any further investigations.
He was born chromosomally normal and is now a fit and well 12 year old.

Sixtyorforty · 28/03/2021 13:15

I had an NT measurement of 3.2 and risk was 1:166. My baby girl is 10 days old and perfectly healthy x

Ariela · 28/03/2021 13:30

139/140 ISN'T Downs.

MyGhastIsFlabbered · 28/03/2021 17:32

What do you mean @Ariela?

popcornapples · 28/03/2021 18:28

Hey @MollyPea,

These were my results and I got a 1/130 chance of Downs.

NT: 2.2
HCG: 6.9 MoM
Papp-A: 1.7 MoM

I was 32 when I was pregnant, had the Harmony test and it all came back fine. My little boy is now 7 months old and no issues.

The algorithm they use to work out your risk is very complex and they told me the reason my risk was so high was because my hcg levels were through the roof. Did they explain why yours was high for your age? I am no medical professional but from my research into it at the time your stats look normal.

It helped me to frame it this way - that I had a less than 1% chance of carrying a baby with Downs.

Easier said than done, but please try not to worry. I've got my fingers crossed for you x

Usabarby · 19/10/2021 12:09

@ThoBerry how were your results?
I just got the news 1:140 and I’m worried sick. It is so hard to keep positive.

ThoBerry · 19/10/2021 12:57

@Usabarby The NIPT came back negative thankfully. Worst week of my life waiting for those results. But we welcomed our beautiful healthy baby boy 2 weeks ago 🥰. It’s hard but try and stay positive as 1:140 is very low risk. I’ll have my fingers crossed for you x