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Antenatal tests

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1 in 19 chance of DA

5 replies

Baileyki · 11/10/2023 12:01

Hi all - I’m new to this!
I had my screening results come back for DS as 1 in 19 chance. My results are below

Age - 31
NT - 3.1
HCG - 1.95 MoM
PAPP A - 0.92 Mom

what is classed as high HCG at 12 weeks + 3 days

I was wondering if anyone else has had results like this? I have had a NIPT test done on Monday and now I’m waiting for the results. The lady at the hospital was really nice and said my bloods looked fairly normal it was the NT measurement which was pushing my odds up. Which is annoying because at my 12 week scan the lady who was doing the scan couldn’t get a measurement because the baby wasn’t playing ball and said “ I’ll just go with the biggest one I measured” which to me means she measured a few times and just went with the biggest one she got. After researching what she was trying to measure, there was no clear view of the back of my babies neck.
I’ve got another 2 days to wait for the results but it’s killing me. Should I be worried?
thanks in advance any advice would be really helpful and comforting

OP posts:
Bloodystressed1 · 11/10/2023 20:14

Hi - sorry you’re here, it’s a very stressful time. I’ve been through this with both of my pregnancies. The first time was a 1 in 29 chance - NT 3.3, hcg 0.8, Papp-a 0.5. I was told by ARC that the NT measurement was likely what pushed that up to high chance, as well as slightly low Papp-A. My NIPT came back low chance and my baby didn’t have DS at birth.
I’m now 32 weeks pregnant with my second - this time I had a 1 in 2 chance from the screening. NT 4mm (also the highest measurement out of several), hcg 2, Papp-A 0.5 (and age 38). NIPT came back low chance again. I opted not to do amnio. I haven’t had my baby yet so I don’t know for sure but the foetal medicine consultant said it’s unlikely to be DS as the NIPt is usually accurate.
Try not to worry, easy to say I know and I was absolutely distraught both times after the initial screening result, my heart goes out to you. 1 in 19 sounds high but actually it’s something like a 5% chance which isn’t high at all. The NHS screening is just a crude algorithm where if you fit some/all of the patterns it will spit out a number and flag you as high chance. Have you spoken to ARC? They were really great breaking it all down for me. Wishing you well, it’s a horrible time.

Baileyki · 11/10/2023 21:08

Hi @Bloodystressed1 thank you so much for taking the time to write all of the above, I really appreciate it. I mean 1 in 2 chance I really can’t moan about my chances when people do have odds which come back as high as yours. It is such a hard choice choosing to have the other tests I really feel for you as well.
i am normally a level headed logical thinker when it comes to number crunching but long story short.
I had a miscarriage in February
My nan passed away in June
My grandma passed away in July
I started bleeding the day of my 12 week scan
My dog passed away a few days before these screening results ….
So at this point I’m all out of optimism 😂 I’m just like this will be the cherry on the cake. I just can’t help but think the worst and I feel so bad about it. I get my results on Friday and I know I won’t even be able to talk to anyone until I know the results.
im going to give the ARC a call tomorrow I’ve heard loads of people say how amazing they are.
thanks so much again for listening and writing the above!

OP posts:
Bloodystressed1 · 11/10/2023 21:54

Bless you, sounds like you’ve had a horrible time lately and I’m not surprised you’re expecting more bad news.
I would also say, I’m not sure what your views are on proceeding with a pregnancy with a baby with DS but I can also recommend the PADS Great Expectations group on Facebook - it’s a group for expectant mums with a high chance result for DS. It’s run by parents of children with DS and Positive About Down Syndrome (a charity). I’ve found it to be a lovely supportive space to ask questions and not feel so alone as other mums are in the same boat. Although it’s run by parents of children with DS, I wouldn’t say I find it particularly anti-choice and it doesn’t feel like they pressure members to proceed with their pregnancies. Both times, I’ve found it really comforting to hear from parents who have children with DS and it’s helped me arrive at a place where I feel that having a baby with DS wouldn’t be the end of the world. Obviously if it would be a 100% no for you to proceed if the baby does have it then feel free to disregard this advice! But I was in an ambivalent place with it where the unknown was really scary but it wasn’t a definite no to proceed with the pregnancy, and that group really helped.

Baileyki · 12/10/2023 15:17

@Bloodystressed1 I had a look last night at that Facebook group! It was so comforting thank you. I had my NIPT results back today ! They all come back as low chance. I’m so relieved and just feel like so much pressure has been lifted. Amazing the results only took 4 days! Just wanted to say again thank you for all the advice above. I know there’s women in our position will read the above and feel better!

OP posts:
Bloodystressed1 · 12/10/2023 16:09

Ahh glad you got the results you wanted. Hope you can relax now and enjoy the rest of your pregnancy! X

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