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Devastated 1:4 chance of downs

184 replies

disconnecteddrifter · 13/08/2020 14:16

I have had 6 consecutive miscarriages and finally got to 13 weeks at the age of 42. Combined test nt 3.8, hcg 1.5, papp a 0.5. This seems certain for downs syndrome in all three areas of the test. I'm going for cvs but it's not looking good. It's stupid to hope isnt it?

OP posts:
Newpuppyplanning · 05/09/2020 00:01

Hang in there OP

Embracelife · 05/09/2020 00:38

Maybe after so many miscariages having a live baby of any kind is better than no baby?
For someone who wants their own baby?
A baby " healthy " at birth can end up disabled thru disease or accident or doesnt have down s but does haVe severe autism or mental health issues...no one can guarantee. Everyone who has a child takes on that risk.
For some the tests are to know there is a heart issue and being ready to treat at birth. There is no obligation moral or otherwise to terminate for health issues...it s a personal choice.
Sometimes it s perhaps easy if you know the condition is fatal ..if you dont know the level of disability such as downs which is a spectrum just like anyone..there are actors with down syndrome and those who marry ..
And others more impacted in day to day life.
You will never know where the potential child will be on the spectrum from the antenatal test. You cannot test every level of disability in the womb .... You can never know how your "healthy" child will be or which challenges. So some take choice.. a decision it is better to not find out. That s allowed.

Op good luck with your results and whatever decision you make if you need to make one.

My ds issues were not diagnosable at the time (a different chromosome issue a microdeletion) but if you said the choice was him as he is or no child..i would choose him.

But it is totally your body your choice.

Any baby can have challenges... antenatal tests allow us to have some prior knowledge but with spectrum conditions with wide variation in abilities you may decide to take chance. Or not.
Your choice. Do you take the risk or not? How much does it matter to you ?

We do know that for majority of cases ...with education and support down syndrome is not the "worst " syndrome to have. If you looking at independence etc... There are many other conditions with a far more severe trajectory.

Timekeeper2 · 05/09/2020 01:34

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Sussexbysea · 05/09/2020 15:51

Hi, I’m in a similar situation. Waiting for my NIPT results to come back. If they are high risk then I’ll be having CVS. I’m so worried

PlateTectonics · 05/09/2020 15:55

Good luck with your results OP Flowers

JennyMY · 05/09/2020 20:16

I am going crazy waiting for my NIPT results 🙁. One of my twins came back high risk from combined screening and I had to wait 3 days to take the IONA NIPT test. They said it would take 7-10 days for results - turns out they means WORKING days, and after an agonising 2 weeks the clinic rang my consultant last week to say the results would be delayed even more (another 3-5 working days) because they needed to retest?!?! But they didn't ask for another blood sample. It's now been 2 and a half weeks since I took the test and it means I'll be going to my 16week appointment with my consultant with no results to discuss. It's agonising not knowing 🙁
Xx

JennyMY · 05/09/2020 20:17

OP and @Sussexbysea, good luck with your results xx

disconnecteddrifter · 07/09/2020 17:03

Just to update. I got the call today to say baby has downsyndrome

OP posts:
Wheytaminute · 07/09/2020 17:15

Sorry OP

No advice. Just Flowers

PlateTectonics · 07/09/2020 17:24

Sorry OP Flowers

HeronLanyon · 07/09/2020 17:27

Op sending you support. Be gentle with yourself.

Crockof · 07/09/2020 17:31

I am so very sorry, whatever you decide your life will be very different now sending Flowers

lauryloo · 07/09/2020 17:32

Oh op. I was so hoping for a better outcome for you.

Be gentle with yourself ❤️ you've got such a hard choice to make and only you can make it.

Dontcarewhatmyusernameis · 07/09/2020 17:42

Hope you’re ok OP. It’s a lot to take in. Flowers

disconnecteddrifter · 07/09/2020 18:02

Thanks I thought I was 100 per cent certain because of reasons I have given before I think I have to terminate but it's so hard being so late in the day.

OP posts:
MissRabbitIsExhausted · 07/09/2020 18:04

So sorry op, be kind to yourself whatever you decide Thanks

Newpuppyplanning · 07/09/2020 18:18

I'm so sorry, OP. You're being incredibly brave. 💐

Sunflower1492 · 07/09/2020 18:23

@disconnecteddrifter
OP I'm so sorry to read this. I'm currently waiting for NIPT results after being given a 1 in 63 chance. I can't imagine how you must feel. You will get through this. Sending you so much love and best wishes 

CottonSock · 07/09/2020 18:24

I'm so sorry it was not good news.

Sussexbysea · 07/09/2020 18:26

@disconnecteddrifter oh lovely. I really hoped I wouldn’t see this update. Life can be so ducking cruel. Look after yourself xx

Princessbanana · 07/09/2020 18:28

💐 Really sorry OP, you are doing the right thing though.

TwilightSkies · 07/09/2020 18:31

So sorry you are going through this OP. X

JennyMY · 07/09/2020 18:34

So sorry to hear you had such difficult news OP. I hope you have a really good support network around you xx

Thisisnotnormal69 · 07/09/2020 18:44

I’m so sorry OP. Flowers

Motormouthvan · 07/09/2020 19:04

Oh love. Thinking of you. Please try to be kind to yourself. 💐