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Original poster

High risk 1:17 risk for Down syndrome

29 replies

Lunafreja · 30/01/2024 16:42

I’m currently waiting on my NIPT results and have around 5 working days to go.

my results were
NF 3.4mm
HCG 0.83
PAPP 0.64

has anyone had similar results or going through this at the moment?

OP posts:
Hoping4amiracle · 30/01/2024 17:20

I’m going through this just now - no words of wisdom I’m afraid but can offer a hand hold.

Scan at 13 weeks 0 days

NT: 1.8 mm
Papp- a : 0.12 MoM
HCG: 2.14 MoM

DS Risk - 1:2

We opted for NIPT but also have an amnio booked for the day the results are due back as we are expecting bad news x

Hoping4amiracle · 30/01/2024 17:20

I’ll be thinking of you and everyone else in this awful position xx

User69611 · 31/01/2024 21:21

@Lunafreja and @Hoping4amiracle I'm so sorry, my thoughts are with you. It is just the most awful time imaginable waiting for the results, I hope you have support whilst you wait and are ok, although I imagine you aren't. I went through it last summer (had a CVS following a 'greater than 1 in 2 risk' - nt 4.7, hcg 2, 0.4 papp a- and sadly it was not the outcome we wanted and we had a TMFR, although know that is not the decision for everyone).

So sending all the luck and really really hope you have a better outcome. xxx

suspiciousmums · 31/01/2024 21:27

Sending you a big hug! I had this is with my middle daughter, 1 in 14 chance. I was besides myself with worry. We opted for the NIPT and it was the worst ten days of my life waiting on results. I completely dissociated myself to the pregnancy, It was the only way I could get through the wait. In the end our results came back clear, but my daughter was then born at 28 weeks and then I felt so guilty I’d wasted two weeks of my pregnancy worrying myself sick waiting for the results. I then started looking into how unreliable these tests are and when we had my third we skipped the nhs testing and lid £400 privately to complete the NIPT. A 1 in 17 chance still means it’s a 94% chance that your baby does not have DS. Sending so much love, my inbox is open if you’d like to message me x

CB1209 · 31/01/2024 21:39

Hello, just wanted to say I feel for you and anyone going through this awful time waiting for results. I posted on here before when I was going through the same with a greater than 1 in 2 chance of DS (nt 1.3, hcg 7.7, papp-a 0.27) It was 4 weeks of hell with high chance nipt, an abnormal cvs, them telling me there was pretty much no chance the amnio would be anything other than confirmatory.. and then the amnio came back normal, they diagnosed confined placental mosaicism and I had my small but otherwise healthy little boy on 4 Jan. just wanted to share that it can work out even with the highest risk screening score you can get. I really hope you get a good outcome. @User69611 i hope you are doing ok, I remember you being supportive when I was going through it x

Hoping4amiracle · 31/01/2024 22:19

Thank you @CB1209 and congratulations on your little boy - a true miracle and must feel so precious after the worry you would lose him.

So sorry you had to go through this @User69611 - I’ve been reading so much about TMFR and pray I have your strength when the time comes.

User69611 · 01/02/2024 10:03

Ahhhh @CB1209 congratulations!! That is amazing, I am so happy your little boy is here safe and well, hope you are both doing ok.

And I am doing well thank you, time is a healer and I am now 24 weeks pregnant again and all seems well this time :)

Thank you @Hoping4amiracle , do keep us posted and let me know if you have any questions, take care xx

Original poster
Lunafreja · 01/02/2024 10:47

hi @Hoping4amiracle , thanks for reaching out and my heart goes out to you. The worry and waiting is awful and I hope you are coping well through it. We’ve been trying to keep busy to pass tine but it is crazy difficult.

@User69611 im sorry to hear about your experience, I can’t imagine how difficult this was for you, thank you for your comment snd solidarity. Congrats on 24 weeks! 🤍

hi @suspiciousmums thank you for the reassurance! It’s true im 13+6 and I’ve just started to notice a small bump and it’s hard because I get hit with excitement and doom at the same time. But you’re right 94% are good odds! Thank you for sharing and congratulations! I’m pleased it all worked out for you 🤍

@CB1209 wow what a story and experience! It’s awful how dragged out the process is! I’m happy it all worked out despite the anxiety and I’m sure stress. Congratulations with your new baby, 4 weeks of joy to balance im sure!

Thank you everyone for your comments, I had a little internet break as I was obsessively reading and researching and found I was making myself depressed. We’re expecting results by Tuesday and will keep everyone posted. By all means anyone else going through this feel free to share here too, it’s a safe space 🤍 I’ve been trying to focus on work but my god it’s hard. I’m currently ping ponging between loving this tiny thing to trying not to be too attached, my finance is finding it just as hard too.

OP posts:
rebecca24y · 01/02/2024 14:19

Hey,

I had my NIPT on Tuesday and hopefully results will be early next week! I’m very upset I don’t think I’ve been this anxious and upset before it’s all I think about it really is awful, it’s making me feel ill.

my results were

NT: 3.2
HCG: 1.81 MoM
PAPP-A: 0.83 MoM

1/24 chance

Original poster
Lunafreja · 01/02/2024 18:04

Hi @rebecca24y I’m sorry to hear you’re going through this too! I had my test in Tuesday too so we are on the same timeline! I hope you’re keeping okay, it’s so hard to try and keep busy and distracted.

just try to remember that’s almost 96% chance it’s not! Really in your favour!

OP posts:
rebecca24y · 01/02/2024 20:09

I think it helps knowing I’m not the only one going through this! Nobody quite understands and they say to try not think about it… it’s literally all I think about! I’m trying to stay positive but also don’t want to get my hopes up 😩

I hope you’re okay too, we’ve got this 💪🏻

rebecca24y · 05/02/2024 14:13

Any news yet OP?

Hoping4amiracle · 05/02/2024 17:04

Hello,

A little update as I know how much the positive stories gave me hope last week.

We were shocked to get a call today that NIPT came back low risk for all trisomies. Really shocked after getting a screening risk of greater than 1:2. We met with the consultant and had a scan were the baby was checked for any anomalies and all looked well. Based on that we didn’t risk an amniocentesis.

Keeping other mums waiting on results in my thoughts and prayers xx

Original poster
Lunafreja · 05/02/2024 17:39

im so pleased for you @Hoping4amiracle ! I bet you can breath now.

I also had my results an hour ago - also all low for all 3! A sigh of relief that’s for sure!

Thank you all so much for sharing your progress too and kind words 🤍 keeping my thoughts with everyone else awaiting their results too xxx

OP posts:
Habbyhadno · 05/02/2024 17:59

I had a 1:12 risk with my now 10 year old, who doesn't have Down's Syndrome or any other the other genetic issues it flags up. Wishing you all the best OP.

Hoping4amiracle · 05/02/2024 21:26

Hello @Lunafreja so pleased you got a low risk as well! Hopefully now we can relax and rest, we’ve had our fair share of drama! X

User69611 · 06/02/2024 14:08

Amazing news both - what a relief, hope the rest of the pregnancies go ok xxxx

suspiciousmums · 06/02/2024 19:08

Fantastic news, wishing you both happy and healthy pregnancies xx

Original poster
Lunafreja · 14/10/2024 00:01

For anyone coming across this in the future anxious in the same position I was - DD was born absolutely fine :)

OP posts:
PMAmostofthetime · 14/10/2024 00:37

Lunafreja · 14/10/2024 00:01

For anyone coming across this in the future anxious in the same position I was - DD was born absolutely fine :)

Congratulations x

Babyshambles90 · 14/10/2024 00:57

Congratulations! I hope the first weeks go smoothly for you. Just wanted to say though that many of us here are lucky enough to have people with Downs in our lives and comments like “expecting bad news”, “awful position” etc could be phrased more thoughtfully. I appreciate everyone feels differently and there are a lot of emotions around this, but in my experience a life with Downs is as valid, as beautiful and for many as welcomed as any other life. No judgement at all on the decisions people make, but being thoughtful with language choices can make a massive difference.

KittytheHare · 14/10/2024 01:03

What a lovely update, and very kind of you to post. Congratulations.

Derbee · 14/10/2024 01:10

Babyshambles90 · 14/10/2024 00:57

Congratulations! I hope the first weeks go smoothly for you. Just wanted to say though that many of us here are lucky enough to have people with Downs in our lives and comments like “expecting bad news”, “awful position” etc could be phrased more thoughtfully. I appreciate everyone feels differently and there are a lot of emotions around this, but in my experience a life with Downs is as valid, as beautiful and for many as welcomed as any other life. No judgement at all on the decisions people make, but being thoughtful with language choices can make a massive difference.

Thank you for pointing this out so gently. As a person with an absolutely adored child with DS in my life (not my DC), language matters. It was noticeable when one poster described their stats as “chance” rather than “risk”.

Hoping4amiracle · 14/10/2024 07:52

Hello @Lunafreja ,

Congratulations lovely update and glad your little girl is here safely.

I had a bit of drama in my pregnancy but all that matters is that he is here now and healthy and happy x

Original poster
Lunafreja · 14/10/2024 18:07

Babyshambles90 · 14/10/2024 00:57

Congratulations! I hope the first weeks go smoothly for you. Just wanted to say though that many of us here are lucky enough to have people with Downs in our lives and comments like “expecting bad news”, “awful position” etc could be phrased more thoughtfully. I appreciate everyone feels differently and there are a lot of emotions around this, but in my experience a life with Downs is as valid, as beautiful and for many as welcomed as any other life. No judgement at all on the decisions people make, but being thoughtful with language choices can make a massive difference.

Hello I just wanted to be clear at this stage of screening unfortunately the change of having a viable chance of DS is extremely extraordinary slim. It’s not to say life with DS isn’t valid it’s to say the chance of being able to carry any child alive is heartbreaking, sad, bad news. I would like to clarify my fear in this whole post isn’t the chance of having a child with DS but statistically speaking having a child who could I could carry to term of see their first birthday. 🤍

OP posts: