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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

High risk results for Downs Test - positive stories ?

57 replies

ReginaPhalange89 · 01/02/2019 22:18

I received a phone call today that my blood has come back as high risk for Downs Syndrome with a 1 in 34 chance . I have an appointment tomorrow to discuss what happens next , tests etc. I think we are going to opt for private testing as I know there's a risk of miscarriage with an amniocentesis

Just wondering if anyone else has had similar results and gone on to have better results at the next testing ? I'm terrified ! Trying to stay optimistic but can't put it out of my mind

OP posts:
Anonymumtum · 01/02/2019 22:22

I had a 1 in 3 (!!) followed by an amnio. He was not affected.

Lollyice · 01/02/2019 22:34

I had a 1 in 15 chance with dd. We decided against further tests.
At the 20 week scan, 7 weeks later everything looked OK and we went on to have a healthy baby.
Both my SILs have had high risk for Downs too, one didn't have further testing and had a healthy baby. The other had the Harmony test and it showed the baby probably won't have Downs Syndrome (due soon)
I guess it is something in my DHs families DNA?????
I hope you get good news.

hipstercat · 01/02/2019 22:40

Oh no, that must be terrifying. Keep in mind though that the combined test has high false positive rates, extremely so if you're approaching/over 40. There is still a good chance your baby is completely fine. Also wanted to mention that the NIPT test is now rolled out on the NHS as a follow-up for high-risk results so you may not necessarily need to do the amnio if it worries you. It may not be available on all trusts yet but was on mine. Best wishes to you! Flowers

ILoveMyMonkey · 01/02/2019 22:42

I had 1:40, had an amnio and he was fine. Apparently bleeding in early stages can affect blood levels and I had a lot of bleeding at 7 weeks. Hope it all works out ok for you.

sleepyhead · 01/02/2019 22:58

1:27. No abnormalities which, terrifying as it was at the time, logically was always the most likely outcome.

You have a higher risk but it's not inevitable that something will be wrong.

Mayjane5 · 02/02/2019 04:29

@Reginaphalange89 are you in the due July group? I recognise your name ☺️ I have results back at 1 in 60 I am booked in for a NIPT/harmony test in a couple of weeks it’s through the nhs but have to pay for it was £275 but cheaper than a private clinic. It is a blood test so no harm to baby. Still a worry though to wait at the moment trying to keep myself occupied with other things. Have not announced pregnancy yet due to this.

sofato5miles · 02/02/2019 05:14

1 in 2. Had a CVS and all was well. He is now 8 and a very robust, neuro typical child.

Original poster
ReginaPhalange89 · 02/02/2019 06:40

Thanks everyone, it's reassuring to hear so many positive outcomes.

@mayjane5 yes I'm in the July group! Gosh I don't think I could wait a few weeks for the test. We looked last night at private clinincs and can get an appointment as soon as Wednesday , but we haven't booked yet we'll see what they say at my appt today. But she did say on the phone Yesterday they don't provide it on the NHS and it's about £400 privately .
We announced our pregnancy already, we just weren't expecting this at all after 2 previous pregnancies being low risk!

They lost the blood sample at my scan appt so I couldn't have the normal combined test, I had to have quad testing instead so only had the blood taken on Monday at 15 weeks !

OP posts:
Soontobe60 · 02/02/2019 06:57

My result was 1:25
I had amino, had to wait 4 weeks for the result! All was well. Worst month of my life.
This was 25 years ago. If it was now, I'd find the money to get tested asap for my sanity.

FriedaTheBreeder · 02/02/2019 07:07

I was given a 1:10 chance after combined test. I went on to have the Harmony test which showed the lowest risk. Baby was born with no issues.

ClanoftheCaveBear · 02/02/2019 07:10

Can I recommend the charity ARC if you need support?
Good luck!
www.arc-uk.org

comradelouise · 02/02/2019 13:32

I've had higher risk on 2 pregnancies (lower than yours) and long story short, both times the amnio ruled it out.

One thing I remember the consultant saying was: if I told you there was a 33 in 34 chance of a bad outcome, you'd think, shit, well that's definitely going to happen, right? And actually right now you have a 33 in 34 chance that there's no Downs.

I'm not saying you should be complacent, but I'm a strong believer in trying not to worry until you know something certain to worry about! Good luck xx

Somethingsmellsnice · 02/02/2019 13:35

I was a one in twenty-seven. Decided against amnio due to past miscarriages and at later scan all presented as fine. 17 year old now doing A levels!

Bumblebeesmum · 02/02/2019 13:40

Think my friends child with Down’s syndrome was a 1:50 risk in pregnancy

Jaxtellerswife · 02/02/2019 13:46

I had 1 in 44 results. We paid private and it came back 1 in 10,000. Good luck to u Thanks

maxbabi · 02/02/2019 14:16

Hi
I had a 1 in 33 or similar met an angel in the hospital canteen who took my hand told me she had been delivering babies for 20+ years and all will be fine and enjoy my pregnancy. She helped so much that's why I call her an angel.
Little daughter is now 19!!
On the ither side imet a lady at a hen weekend and she was roughly due same as me she had a tiny bump I was so jealous as I was huge (not relevant). Her odds were in the hundreds she had a downs baby. Loved.
So what are odds/data???
Enjoy your pregnancy and try not to worry

GypsyRoseTea · 02/02/2019 14:20

1/16 and was fine. Had amnio which was also fine

Original poster
ReginaPhalange89 · 02/02/2019 17:34

Thanks everyone , feel more positive today! We've booked a Harmony scan for Wednesday so hopefully the results will be good 🙏

OP posts:
Mayjane5 · 03/02/2019 06:22

Good luck for Wednesday hope you don’t have to wait long for results. We are out of the uk at the moment so have to wait until we get back so a bit of an anxious wait till then x

Original poster
ReginaPhalange89 · 03/02/2019 13:20

Thank you @mayjane5, good luck to you too when your test comes around! I'm just trying to keep myself occupied to stop thinking about it but it's so hard. I've woken in the night the last 2 nights and can't sleep from thinking about it , even though I'm knackered !

OP posts:
user1470147116 · 04/02/2019 14:41

At my NHS 12 week scan they said my risk of Downs was 1:56

Age is a big factor, I’m 40.

NHS offered to do amniocentesis!

I did the NIPT test privately which then told me I was at very low risk 1:10,000

www.thebirthcompany.co.uk/nipt.php

NHS told me to ignore their results as NIPT is much more accurate.

My beautiful healthy baby is napping currently :)

Original poster
ReginaPhalange89 · 05/02/2019 09:24

@user1470147116 that's great ! Hopefully I'll have the same results. I'm apparently 1 in 34, I'm only just about to turn 30 so I feel like that's really high for my age, think the standard for age 30 is 1 in 900 . I have the test tomorrow night so fingers crossed for good results !

OP posts:
Mayjane5 · 07/02/2019 04:54

@ReginaPhalange89 hope you get a good result, that’s so quick for them to come back, I thought it would be a week or something. How was the actual testing? Is it just like a normal blood test? I’ve got just over two weeks until ours

Original poster
ReginaPhalange89 · 07/02/2019 05:53

@mayjane5 had the test last night, it's just a blood test yeah ! Took a couple of vials full and filled out a form. Said it'll be approx 7 working days before I hear anything . Going to be a long wait 😬

OP posts:
FlagFish · 07/02/2019 05:56

I had 1 in 200, so not that high but not a risk I felt comfortable with (as my previous pregnancy 2 years earlier has been 1 in 25,000). I had an amnio and all was fine. Good luck OP.

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