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Original poster

High risk of downs

33 replies

MelissaD10 · 01/12/2022 17:31

Hi all,

going to read through all your threads next but I got given a 1 in 149 chance of downs today. I have seen some of yours are higher and I’m so sorry. How has everyone found having an nipt? I’ve had my blood taken but now got a wait for results 😭
im absolutely devastated x

OP posts:
BabyOnBoard90 · 01/12/2022 23:55

MelissaD10 · 01/12/2022 17:31

Hi all,

going to read through all your threads next but I got given a 1 in 149 chance of downs today. I have seen some of yours are higher and I’m so sorry. How has everyone found having an nipt? I’ve had my blood taken but now got a wait for results 😭
im absolutely devastated x

Conversely there is a greater than 99% chance the baby is fine based on that statistic.

Original poster
MelissaD10 · 02/12/2022 03:54

Honestly I hadn’t looked at it like that thank you. Yesterday was really stressful and I’ve assumed since I got the call as if it’s a conclusion . I’m hoping x

OP posts:
babysharksb1tch · 02/12/2022 04:36

Yep. Had exactly those results and all was fine OP. The odds are in your favour.

Pictograph · 02/12/2022 04:37

I had a risk of 1 in 200, had an amnio, all was fine. Good luck OP.

babysharksb1tch · 02/12/2022 04:38

Sorry should add that the NIPT was back within a few days (longest days ever) with a really low result. It's far more accurate. We also have a really careful 20 week scan and further monitoring due to high HCG and low Papp a. Flowers

tirednewmumm · 02/12/2022 04:40

Just as a counterpoint babies born with Downs are still 'fine' too!
My niece was born with it and is a totally gorgeous and wonderful addition to our family.
The group Positive about Downs Syndrome might be reassuring to you that even if baby does have it they can have a positive and meaningful life

havingabubble · 02/12/2022 05:25

Definitely go for the NIPT, it is far more accurate. This showed our baby was at low risk whereas the combined testing showed high risk

whiteroseredrose · 02/12/2022 05:28

I think mine was around that. I had amniocentesis (no Nipt then) and all was fine.

Original poster
MelissaD10 · 02/12/2022 08:04

im really sorry I didn’t mean my post to sound the way it obviously does. Now that I’m over the shock etc I am absolutely gutted I’ve talked about termination if it was positive. Think it’s just a rollercoaster of emotions .
i honestly have no idea what I would do at this point just so much to consider

OP posts:
Original poster
MelissaD10 · 02/12/2022 08:32

Just wanted to ask where the nipt was done? We live in the north and it has to go to Birmingham-trust me to hit postal strike yesterday and the weekend! X

OP posts:
Original poster
MelissaD10 · 02/12/2022 08:34

babysharksb1tch · 02/12/2022 04:38

Sorry should add that the NIPT was back within a few days (longest days ever) with a really low result. It's far more accurate. We also have a really careful 20 week scan and further monitoring due to high HCG and low Papp a. Flowers

Sorry that above message was for you babysharksb1tch but it’s still early and I did it wrong 😂

OP posts:
IncessantNameChanger · 02/12/2022 08:36

I had your results and decided to do not further testing after phoning ARC. They are very calming and give you very good information

tirednewmumm · 02/12/2022 08:42

MelissaD10 · 02/12/2022 08:04

im really sorry I didn’t mean my post to sound the way it obviously does. Now that I’m over the shock etc I am absolutely gutted I’ve talked about termination if it was positive. Think it’s just a rollercoaster of emotions .
i honestly have no idea what I would do at this point just so much to consider

Totally understandable it's a huge shock and I didn't want to sound at all like i was invalidating your feelings. It's easy to panic and think the worst and just wanted to offer a small positive outlook. Wishing you lots of luck with your pregnancy Flowers

Original poster
MelissaD10 · 02/12/2022 08:48

IncessantNameChanger · 02/12/2022 08:36

I had your results and decided to do not further testing after phoning ARC. They are very calming and give you very good information

Can I ask if you’ve had your baby and what the outcome was?
I know if I don’t do more testing I’ll worry for the rest of the pregnancy and I’ll be a nightmare I’m a worrier anyway xx

OP posts:
Original poster
MelissaD10 · 02/12/2022 08:51

tirednewmumm · 02/12/2022 08:42

Totally understandable it's a huge shock and I didn't want to sound at all like i was invalidating your feelings. It's easy to panic and think the worst and just wanted to offer a small positive outlook. Wishing you lots of luck with your pregnancy Flowers

Show quote history

Thank you I really appreciate that. I’m going to have a look into the group you mentioned to, helps to have all the information and I think you hear the syndrome and panic I honestly never realised there was a spectrum when it comes to it, And I’ve realised I know next to nothing about the condition . X

OP posts:
Cantstandsmugness · 02/12/2022 08:56

I had a 1 -70 chance and had an amniocentesis - it took 3 weeks to come back in those days it was horrid. All was good though. I never wanted to go through that stress again so for my second child i refused all tests.

Original poster
MelissaD10 · 02/12/2022 08:58

Cantstandsmugness · 02/12/2022 08:56

I had a 1 -70 chance and had an amniocentesis - it took 3 weeks to come back in those days it was horrid. All was good though. I never wanted to go through that stress again so for my second child i refused all tests.

Since I have spoken to the screening midwife I wish I hadn’t had the combined test. She didn’t speak very highly of the test and she in personal experience didn’t have one as an older mother. but of course I just agreed to any and all testing not thinking of the outcome x

OP posts:
Cantstandsmugness · 02/12/2022 09:03

@MelissaD10 also when I went for the amnioticentisis they told me they couldn't remember any test coming back positive having been done because of the ratio blood test. The consultant also said to me that many children born with downs go on to do O levels (as they were back in the day) before he even put the needle in I knew I was going to keep the baby and then I had the extra worry of miscarrying because of the test.

tirednewmumm · 02/12/2022 09:03

Good plan, at least that whatever you decide you'll know it was the right decision for you and that you had all the important information. Hope you don't have to wait too long for further testing

CristinaNov182 · 02/12/2022 16:57

MelissaD10 · 02/12/2022 08:58

Since I have spoken to the screening midwife I wish I hadn’t had the combined test. She didn’t speak very highly of the test and she in personal experience didn’t have one as an older mother. but of course I just agreed to any and all testing not thinking of the outcome x

Show quote history

It’s good to have the test, as it can pick up other issues that can be easily dealt with if you get treatment right away.

for ex, I had low Papp-a during my first pregnancy, normal nuchal and hCG. It have me 1:150 risk for DS but the nipt came back as low.

but this low Papp-a on its own gave me risk of preeclampsia, intrauterine growth restriction, preterm and still birth. I had IUGR ending with static (=no growth) for the last weeks.

I took aspirin from 16 weeks, 75 mg daily. Maybe it help, maybe it could have been worse.

second pregnancy they gave me 150mg daily aspirin from 12 weeks, they said the dose has been updated, and indeed I’ve looked it up myself and this should be the right dose, plus starting it best at 12. If you start after 16 it might not help at all. So hopefully this time around I won’t get any IUGR at all.

other issues could be from increased nuchal measurement, I’ve read it needs more scans to see if it solves by itself, or further tests. It could be even some heart issues, and better to know early and see what they can do.

increased hCG also gives risk of preeclampsia

2nd pregnancy my risk was 1:77, so higher than first, but I’m also older. Nipt again fine.

look up you individual test results as well, flag it with them if any are outside the limits (some will be as that’s why you it the high risk). They should have told you anyway, but some hospitals are not as good as others. I’m in a different town now. With my first I had to raise the low Papp - a with them to give me the aspirin and extra growth scans. And it took 4 weeks and probably started the treatment late..

coldcoldcolda · 02/12/2022 17:20

I had 1 in 8 chance of Down's syndrome. Opted for a CVS to find out, and baby was chromosomally normal. He is now a cheeky 6 year old. I remember the feeling of panic and despair well. You will be ok no matter what. Lots of love to you.

For my second child I skipped the nhs 12 week testing and had a harmony blood test done instead. Not 100% diagnostic but pretty damn close and saved a lot of worrying

Original poster
MelissaD10 · 02/12/2022 17:44

Probably a silly question but we’re you given the results or did you have to request? I haven’t been given any details of amounts and things

OP posts:
Original poster
MelissaD10 · 02/12/2022 17:45

coldcoldcolda · 02/12/2022 17:20

I had 1 in 8 chance of Down's syndrome. Opted for a CVS to find out, and baby was chromosomally normal. He is now a cheeky 6 year old. I remember the feeling of panic and despair well. You will be ok no matter what. Lots of love to you.

For my second child I skipped the nhs 12 week testing and had a harmony blood test done instead. Not 100% diagnostic but pretty damn close and saved a lot of worrying

Thank you for sharing your story I’m so pleased everything turned out okay x

OP posts:
Muchtoomuchtodo · 02/12/2022 17:50

Dc2 was 1 in 52 chance of having Down’s syndrome

we decided not to have any further investigations. Dc2 does not have down’s

coldcoldcolda · 02/12/2022 20:07

@MelissaD10 do you mean for the cvs results? Once procedure had been done (not pleasant but fine - does carry risk of miscarriage) I had to wait a week for initial results which said no Down's syndrome. Then I paid extra for full karyotype testing (checking for anything and everything else) which took a further week. They called and said baby was chromosomally normal