Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
Pregnancy

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

Original poster

1 in 5 chance of Down’s syndrome

30 replies

Jomummy1013 · 05/11/2021 17:15

Hi all, not posted on here for ages.
Recently found out I am pregnant with my fourth child and I was too late for the first trimester screening. I went along for a scan and I was 16 weeks so I just had the second trimester bloods. Got a phone call yesterday saying that the tests say I have a 1 in 5 chance of Down’s syndrome, was not expecting that, even though I just turned 40. My other three kids were all low risk.
I am having an amniocentesis on Tuesday and I will know the results on Thursday.
Does anyone have/had any similar stories/outcomes? I have the letter confirming my risk level - it actually says >1 in 5 but the fetal medicine team told me the highest chance is 1/2. None of the figures mean anything to me, I've googled. I am scared Sad

OP posts:
ImmyMc · 05/11/2021 18:32

From reading previous posts on here, I know that lots of people have had this but when they had the NIPT test it turned out to be a 1 in 10,000 chance.

SirSamuelVimes · 05/11/2021 18:38

I hope further tests give you better odds, but if I were in your position I would be very seriously considering an abortion. Sorry if that's not what you are looking to hear, but I wanted to say it, as it's a valid response and if you feel that way too, that's ok.

ParmigianoReggiano · 05/11/2021 18:40

The amnio will give you a definite answer one way or the other. I had one and it ruled out Down's, but I have to tell you that my odds weren't as high risk as yours. Good luck OP.

PurplePansy05 · 05/11/2021 18:44

For goodness sake. People who don't understand shouldn't comment, sorry. OP, amniocentesis will not give you better odds, you will know if your DC has DS or not. It's a diagnositic test.

With regard to the odds now, they are calculated based on multiple factors, including your age, weight etc. The baby may be fine. You need to wait for the results of your amnio first and then take it from there (I understand it's very hard). Big hugs Flowers xx

SirSamuelVimes · 05/11/2021 18:48

Apologies, I didn't realize the amniocentesis gave a 100% reliable result.

I stand by the rest of my post.

Original poster
Jomummy1013 · 05/11/2021 18:58

Thank you for all your replies. Smile
I don’t want to offend anyone here but as a PP said, I will have an abortion if it has DS. I really hope that doesn’t offend anyone SadI am a single mum, I have three children and it’s hard by myself as it is, I work almost full time and I am exhausted all the time. This baby is the result of a relationship which is now over, my other three children are with my ex husband. I didn’t know I was pregnant for ages as I was suffering from an inner ear infection which made me sick and and dizzy.
I’ve looked at the figures on my letter and from what I can ascertain the hcg and inhibin are high, the other two things on there look ok. But obviously I have a very untrained eye.
I will know more as of next week but it’s a nerve wracking and scary time. I can feel the baby moving about, I have seen it on the screen, I’ve heard it’s heartbeat. I feel horrible for it. The lady from fetal medicine told me they can tell me the sex at the amnio if I want, not from the sample but if baby is in a good position they will have a look for me. She said as I’ll be 17 weeks they can tell me. The sex doesn’t seem important and in a way it’ll probably make me feel worse and more attached but I just don’t know, I am trying to detach myself from this situation, focus on my three lovely children and get plenty of rest xx thank you for your replies I shall keep this thread updated x

OP posts:
Original poster
Jomummy1013 · 05/11/2021 19:01

And I’ve had it said to me that there is around an 80% chance baby will be fine, that the quad test by itself isn’t the best, but I’m pretty much resigned to being told the baby has Down’s syndrome. 1 in 5 is not good odds, my other kids were around 1 in over 1000!

OP posts:
CurryandSnuggle · 05/11/2021 19:13

You’ve got to do what is right for you Flowers Sorry you have this uncertainty. Xx

Pinkywoo · 05/11/2021 19:28

I had exactly the same situation, too late for the combined screening and quad came back at 1-4 for Downs (I'm 41). I had the amnio, which wasn't painful just a bit uncomfortable, and it came back all clear, hopefully yours will be too Flowers

Pinkywoo · 05/11/2021 19:30

Apparently the quad test is more affected by the mother's age, like you my two year old was 1-1200 so 1-4 was a massive shock.

BertieBotts · 05/11/2021 19:34

1 in 5 is a 20% chance with an 80% chance your baby is genetically normal.

No they are not the best odds, but they are still in your favour. Go for the amnio, don't find out the sex (it will just haunt you and you can find it out at 20 weeks if everything is fine anyway) take it one step at a time, get the results and go from there.

Hand hold. It's scary when you get news like this. The quad test is a pretty blunt test as said above and when you've had the amnio you'll know. So you can make a decision about what to do then.

HeyFloof · 05/11/2021 20:13

Have the amniocentesis, and see where you are from there. The odds are in your favour and fetal medicine know what they are looking for.

If it does turn out to be bad news of the worst kind then there is support available. Arc and SANDS are two which you woube signposted towards. There are also threads on here.

What I can tell you from my experience though is that, if you do have to make a choice to say goodbye, then being able to name them, even if it's just for you to know at some point in the future can help with the grief.

I am so, so sorry that you are in this position and wish you all the very best. Flowers

Original poster
Jomummy1013 · 05/11/2021 21:05

Thank you all for your super kind responses xx I feel a little better (and a little emotional) reading them. Thank you x I shall keep this thread updated xx

OP posts:
Original poster
Jomummy1013 · 10/11/2021 17:44

I had my amnio yesterday and my phone call today. The baby is free from Downs, Patau’s and Edwards. I am in total shock. I was sure it was going to be positive xx

OP posts:
GeorgiaMcGraw · 10/11/2021 17:56

@Jomummy1013

I had my amnio yesterday and my phone call today. The baby is free from Downs, Patau’s and Edwards. I am in total shock. I was sure it was going to be positive xx
Oh I do love to see happy news on here! Congratulations @op, hopefully you can enjoy your pregnancy now!
Scirocco · 10/11/2021 18:01

That's wonderful news! Congratulations and I hope things go smoothly for you from here.

ParmigianoReggiano · 10/11/2021 18:09

Good news OP!

CurryandSnuggle · 10/11/2021 18:10

Congratulations OP on your excellent news!!

SirSamuelVimes · 10/11/2021 18:11

That's wonderful news, OP, I'm so happy for you!

Pumpkinsonparade · 10/11/2021 18:13

Congratulations op!

Embracelife · 10/11/2021 18:20

Dud you ask forcheck on all chromosome? There are many other syndromes like 22q. Given they did amnio they can check for a whole array ,
Since you older and concerned

Original poster
Jomummy1013 · 10/11/2021 18:47

Thank you all. I am still in shock. I have been crying, I don’t even know why. I had prepared myself for a termination and now it seems like I am going to have four babies after all. I was certain it was going to be positive. The beta HCG was 4.13 mom and the inhibin was 3.92 mom. Both really high.
They just did downs, edwards, patau, I didn’t know they would do anything else? I guess anything else will be detected at the 20 week anomaly scan? Daffodil

OP posts:
Original poster
Jomummy1013 · 10/11/2021 18:50

I asked if they had what the baby’s sex was as part of the amnio and they hadn’t recorded its sex, which surprised me; thought would be matter of course. But I think it purely was those three things xx I am exhausted x

OP posts:
Embracelife · 10/11/2021 19:08

You cannot test for everything but you can check and test for many things.Good luck

HeyFloof · 10/11/2021 20:00

@Jomummy1013

I had my amnio yesterday and my phone call today. The baby is free from Downs, Patau’s and Edwards. I am in total shock. I was sure it was going to be positive xx
Wonderful, wonderful news! I bet the relief is palpable. Congratulations OP, I'm so pleased for you ❤️