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Antenatal tests

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Original poster

1/26 chance of Downs Syndrome

29 replies

Jupiter92 · 18/01/2022 20:30

Hi everyone, this is my first thread here.

I guess I’m just looking for support/ reassurance. I had my 12 week screening and blood test on Saturday. The NT measurement was between 3.6-3.9mm the doc wrote 3.6 on the form.
Combined with the bloods I have come back with 1/26 chance of DS. I have done the NIPT blood test but I’m just waiting now for the results.
I’m British but I am living abroad and they have said they will available on the 7th feb! It just feels so long away. I will love my baby regardless, I guess what I fear the most is seeing people look at me with pity etc if it does come back positive, I hope that makes sense and doesn’t make me sound like an ahole.
It’s sort of put me off sharing the news more widely yet but I’ll be 15 weeks when I get the results!

I guess this is more of a long expression of how I’m feeling rather than a question. Anyone who’s been in or is in the same conversation let’s chat! Xxx

OP posts:

LazyYogi · 18/01/2022 21:00

I'm 15 weeks. Did the combined test last week and came back 1 in 20. It was a shock as I'm only 30 and wasn't expecting anything. I'm just one of those people that wants all the info possible so I did the test. Wish I hadn't gone for it tbh. But had the blood test for NIPT today and thankfully expect to hear next week. 7th of Feb is a long wait! That's hard for you. They said the test at my hosp is run weekly so maybe it's a similar idea. Only run every so often.

It's horrible waiting though isn't it? I hope to love my baby regardless and I'm sure I will but it puts a dampener on the whole thing. I had told friends after the scan but now I'm holding back from telling work to avoid the joyful chats until I can be certain baby is healthy, DS or not.

lovelygreenplants · 18/01/2022 21:50

Hello OP, where are you living? I had antenatal tests in the UAE when I was pregnant with my first (age 30) - the consultant advised that I had ‘the maternal age’ of a 40 year old and similar estimate on the risk of Down’s syndrome. I flew back to the UK for Christmas shortly afterwards and booked a private test. The results were 1:2500, so very different. As a consequence I completely lost faith in the UAE medical system and we moved back to the UK!

Original poster

Jupiter92 · 18/01/2022 23:53

Thanks for your replies! @lovelygreenplants I am in Brazil so that brings all of its own challenges, from what I’ve read the testing seemed the same but who knows! sometimes I do wish I was back at home doing all of this! Cheaper and easier I imagine haha.

@LazyYogi I hope it all comes back well for you! Our odds are very similar but I have read a lot of positive stories. I think we both feel exactly the same at the moment xx

OP posts:

HoneyPea · 19/01/2022 08:18

I'm going through this at the moment too (in the UK) Went to our 12 week scan and baby had an NT of 4.9mm that and my age put our risk of DS at 1:7. Had the NIPT last Thursday and am waiting for results now. They have said they should be back within 2weeks.
7th Feb does seem like a long time away 🙁 Is there any way they could come back sooner?

Original poster

Jupiter92 · 20/01/2022 10:31

@HoneyPea how are you? Have you heard back yet?
I’m really hoping I get the results sooner! I just keep checking my emails but I think it is to do with how many women are getting the test done as to how long it takes so I probably have to just sit tight and wait xx

OP posts:

HoneyPea · 20/01/2022 10:37

[quote Jupiter92]@HoneyPea how are you? Have you heard back yet?
I’m really hoping I get the results sooner! I just keep checking my emails but I think it is to do with how many women are getting the test done as to how long it takes so I probably have to just sit tight and wait xx[/quote]
Yes I got the results yesterday afternoon and we are high risk 😢 Having an amniocentesis on Monday x

Original poster

Jupiter92 · 20/01/2022 23:40

@HoneyPea I hope it all goes ok for you

OP posts:

Fleur405 · 21/01/2022 11:52

It’s normal to feel this way. I have no experience with downs but my son had a rare genetic disorder and we are waiting to find out if new baby will also be affected. We are waiting until the birth to do the testing as the only way to know is via invasive testing which we don’t want to risk - mainly because it doesn’t matter to us if baby has the syndrome or not. But I hate feeling like people pity us. I don’t think they actually do to be fair but it can feel like that.

LazyYogi · 24/01/2022 14:10

Result back as low chance. And she I asked if there was any other suggestion from the initial blood results to suggest anything was amiss and she said no. All looked normal.
Good luck to anyone else waiting 🤞

Original poster

Jupiter92 · 27/01/2022 11:13

Thank you for your reply @Fleur405. We are on the same page I think xx

@LazyYogi that’s great news! 10 more days for me !! Xx

OP posts:

Mjfdrjjbf · 28/01/2022 05:53

Hi @Jupiter92. Sorry you’re having to wait so long for results. You said the results wouldn’t make a difference to your pregnancy choices so I hope you don’t mind if I drop by with a bit of advice. I know what you mean about not wanting the pity - as someone with a baby with DS my advice would be to take hold of the narrative and guide people on how you’re feeling.

Having a baby with DS isn’t always easy and it is a bit different but my experience (and the experience of my friends) has been a really good one. I adore my LO, she’s developing brilliantly, and although it’s obviously a bit slower than her sibling she’s hitting all the same milestones. Have a look at the Positive About Down Syndrome website - it’s a UK based charity but they have some great resources and stories from families who’ve been there.

Your baby might have a totally standard number of chromosomes (and if so, great!), but if not, know the overwhelmingly most likely outcome is still that it’s all going to be ok. Things are v different for children with DS now than even a generation or two ago.

Congratulations on your pregnancy and good luck xx

HoneyPea · 28/01/2022 13:01

@Mjfdrjjbf

Hi *@Jupiter92*. Sorry you’re having to wait so long for results. You said the results wouldn’t make a difference to your pregnancy choices so I hope you don’t mind if I drop by with a bit of advice. I know what you mean about not wanting the pity - as someone with a baby with DS my advice would be to take hold of the narrative and guide people on how you’re feeling.

Congratulations on your pregnancy and good luck xx

I hope you don't mind me asking but did your little girl have any other issues alongside the Down's syndrome? We have found our baby has Down's syndrome but also has heart issues (possibly serious) and possible breathing problems on top.

Mjfdrjjbf · 28/01/2022 14:56

@HoneyPea she’s totally healthy - she had a teeny hole in her heart but it’s closing on its own. Obviously heart problems are more prevalent in babies with DS. Some require surgery - many don’t. I have friends whose babies have had heart surgery and they’re thriving. The run up can be hard as they often need extra help so might initially be tube fed as they can tire easily pre surgery. It’s obviously a scary thing to think about but there’s a whole, wonderful community waiting here to hold your hand through it if that’s where your journey takes you.

There’s a private group on Facebook run by Positive About Down Syndrome who I mentioned above called DSUK PADS Great Expectations for expectant mums with a confirmed or high chance diagnosis. Worth considering joining if you want to speak to others in the same situation. They have a heart buddy scheme for families going through surgery too and can pair families up.

Of course have conversations with your medical team too as they’ll know about your specific situation.

Sending a lot of love your way. For what is worth I’m a very pro choice DS parent - just want you to know there’s support, info and love out there x

HoneyPea · 29/01/2022 21:03

@Mjfdrjjbf Thank you for your reply. The consultant has told us we would need to go to Birmingham to a heart specialist for a closer look at the heart as she can see there are a few serious issues. She has also said that if we choose to continue she's not sure the baby will make past 26weeks.

Mjfdrjjbf · 30/01/2022 09:25

@HoneyPea I’m so sorry you’re going through all this, what an awful and stressful time for you. It’s great that you’re being referred to a real specialist who can hopefully give you the information you need. I just want to give you a big hug.

Elskerdeg · 30/01/2022 09:29

Hey all. Also waiting to hear my nipt results, will be two weeks since I had it done on Tuesday so hoping I get the call Monday. My odds were 1 in 5 from the original blood test so not feeling too positive!

Original poster

Jupiter92 · 30/01/2022 15:35

@Elskerdeg I hope you don’t have to wait too long to hear back xxx

OP posts:

Original poster

Jupiter92 · 30/01/2022 15:35

I’m still waiting… 8 days to go!

OP posts:

Chammy01 · 31/01/2022 23:12

Hi ladies , I found myself straight on Google reading so much so that i came across this chat and just had to.sign up., can I just say what lovely ladies you all are . I had my first dating scan (13wks 2days) babys NT was 2.60mm
But my bloods where took and came back along with my age (33) high risk of baby having DS
I'm 1 in 22 , I was booked in next day to dicuss options .. we was told the nipt was available and had that done this morning was told 7 days but could be sooner for results . This is my 4th pregnancy I miscarried last year seeing as its been nearly 6 years since my last child was born I feel I'm very aware 4th time around and can not stop worrying..
Having a baby with DS doesn't change how ill love my baby of course not. What I think I'm saying is ... I found some relief in knowing/ finding this page.

Original poster

Jupiter92 · 31/01/2022 23:33

Hi @Chammy01 welcome! I’m sorry you find yourself on this thread but I hope it’s some comfort for you.
I totally understand your feelings, I got my results today (a week early) and I have been told the baby is low risk. Our odds are very similar so I hope the same for you as well.
Here if you want a chat 💓

OP posts:

Chammy01 · 01/02/2022 08:38

Hi @Jupiter92
Thank you for the welcome & the reply
Wow what amazing news and a week early ! Aw so relieved for you hun its so scary the unknowing
Some comfort in knowing somebody similar odds is low risk xx

Elskerdeg · 01/02/2022 17:00

Hello again. I've received my results today and.... The lab messed up both samples so they are unusable.
Amnio this week it is then!

Chammy01 · 01/02/2022 17:14

Hi hun
Oh no ! As if this isn't stressful waiting enough.
Hope all goes well and your have your answers soon x

Original poster

Jupiter92 · 02/02/2022 22:55

@Elskerdeg oh no! I’m so sorry that happened, how annoying! I hope you’re doing ok xx

OP posts:

Elskerdeg · 02/02/2022 23:13

[quote Jupiter92]@Elskerdeg oh no! I’m so sorry that happened, how annoying! I hope you’re doing ok xx[/quote]
Thanks. It's a bit annoying but at least the amnio will let me know for sure.
I'm glad yours came back low risk x

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