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Antenatal tests

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Original poster

4.2mm nuchal translucency

25 replies

ClaireK1003 · 01/01/2016 15:58

Hi everyone, I've been reading so many of these threads and they have helped alot.
I'm currently feeling numb after having our 12week scan on Tuesday and being told yesterday I have been given 1:25 for T21 and 1:2 for T13/T18
Im trying to stay positive but I know it's not great odds.
I've been reading a low hcg and low papp a are the results for T18/T13 high risk; I have had low hcg since 5 weeks but doubled normally so I'm clinging onto hope this might be why.

I'm preparing for the worst but having spoken to friends they have had similar and come out positive.

I have a CVS booked for Monday as my risk is so high it's outweighing the miscarriage risk.

I've had 2 miscarriages and I was worried so much about keeping the little one going I really didn't expect there to be anything wrong.

Has anyone had similar results? Oh I'm 30 so no spring chicken but not sure how much that's affecting my risk.
Thank you for any replies xx

OP posts:
Miffykins123 · 01/01/2016 19:36

Hi ClaireK1003

I was given a 1:13 of T21 at 20 weeks. I had an amino as a result.
I was 34 at the time so older than you. I can't comment on age affecting risk or hcg levels - I really don't know enough, but I will never forget how upsetting and scary that time was. I really feel for you.

I spent hours scanning the internet. Depending on the article I read I would feel positive or broken. I did however find these people AMAZING. Impartial, kind and supportive.
www.arc-uk.org/
Hope it's of some help :)

bishboschone · 02/01/2016 16:26

Just popping in to say I feel your pain , waiting for the cvs , then waiting for the results . I would ask if they can do a array cgh as well as the karyotype on the cvs . Good luck .

Original poster
ClaireK1003 · 02/01/2016 19:29

Thank you for your replies, it's much appreciated. Bishboschone wishing you luck with your results, I'll mention the array cgh on Monday. Everything crossed so hard for some good luck, doesn't really feel real if that makes sense.
Life seems to have been standing still last few days, everything rides on results next week.
I feel heartbroken that I may lose another much wanted baby, trying to cling onto the tiny bit of hope we have though

OP posts:
bishboschone · 02/01/2016 20:30

I'm not waiting now , my son is 4 and a half .. It was a very hard week though. Good luck .

eden01 · 03/01/2016 00:56

Hi ClaireK1003,

I just wanted to let you know that I was in your exact position 18 months ago. Same measurement and odds from what I can remember. I know how awful it is to receive the initial news - total shock, like being hit by a bus shock and then the CVS and then the waiting for results, it's all horrible. I researched loads even though everyone told me not to - it was my way of coping I suppose. All I can say is that for us, everything turned out to be ok and I now have a beautiful baby girl but it left me totally scared throughout the rest of my pregnancy and I will never forget how hard that time was. Wishing you all the luck in the world, stay positive because I know for a fact that there is still lots of hope. x

KittyandTeal · 03/01/2016 09:34

I had lower stats than you but yes; low hcg and low Papp a are markers for t13/t18.

I had low hcg and very low Papp a (lowest the lab had ever seen 0.008mom). Originally they were simply worried about iugr but my 20 week scan showed up som anomolies. Unfortunately our dd2 had T18 and we had a tfmr at 22weeks.

The wait for results was horrific but you should be able to get results for the major trisomies in 2-3 days.

I'm sorry you're going through this. Arc are a great charity and definitely worth getting in touch with.

Tbh risk factors are simply numbers. My risk factor was 1:8000 then revised by kings to 1:43. Someone's got to be that 1 but equally lots of people are not that 1 iyswim.

My advice would be to research T13 and T18 and spend some time thinking about what your decision ,I that be if the results are positive. I was glad that we'd already made our decision when we got our results, it made the next parts a bit easier/quicker.

Original poster
ClaireK1003 · 04/01/2016 14:49

Well I'm not going to lie, the cvs was horrible! I'm not sure if it's more the shock of it but it's the weirdest feeling I've ever had.
Unfortunately the baby hasn't grown since last week and on the scan you can see its not developed properly so even without the results I know it's bad news.
Thank you to everyone for taking the time to reply, it's been comforting to put my thoughts into words. Hopefully next time our luck will be in, 4th time lucky xx

OP posts:
bishboschone · 04/01/2016 17:30

Hope you are ok , it is horrible isn't it . I'm sure my consultant took a run up to get that needle in through me . Take care of yourself .

KittyandTeal · 04/01/2016 18:25

It is a horrid and strange feeling. Try to take it easy for a couple of days.

I'm sorry it doesn't look like good news. Did the doc give you any indication from the scan of what may be wrong?

It may be worth considering calling arc, they are brilliant with scan results and someone with a similar experience will be able to talk to you

Original poster
ClaireK1003 · 04/01/2016 19:46

The baby is smaller than it should be, by the looks of it there's no real profile to the face, the limbs are small and legs tucked under. I think they said T13 was my highest risk.
It was really hard seeing the baby knowing it'd be the last time but it helped too.
This baby just wasn't ready for the world but I'll keep all the photos and remember always.

I'm just worried about the next step now, I'm not worried about me I'm just so upset that the baby will be in pain during the process.

OP posts:
KittyandTeal · 04/01/2016 20:01

I can promise you the baby won't be in any pain. I know this as I did lots of research and reading after having a tfmr at 22 weeks.

It is really hard and so so unfair. I'm sorry you are gong through this. My dd2 had T18, which presents in a very similar way to T13.

Original poster
ClaireK1003 · 05/01/2016 01:07

Thank you kitty, it's what I'm so afraid of that my baby would suffer. I made the mistake of popping the question into Google and the first page was a very aggressive anti abortion page about how horrible this 'murder' would be... That's enough Internet for today!!
My moods are like waves, I've just had a breakdown but I feel very calm now and I know this will be the case for a while.

I came as close as I ever have to a panic attack in the waiting room today, full of expectant mothers and children, posters on the walls and baby adverts on the TV. The noise of the room became deafening and felt like I couldn't escape and I had to walk out in a panic if tears.
The staff were very nice and offered to seat me somewhere else, I really shocked myself with my reaction.

I'm sorry you had to go through that at a much more advanced stage of pregnancy. I keep telling my husband that we need to draw on the positives, we know we can get pregnant and carry a baby to this point (5 weeks was as far as we've previously reached)
I'm hoping these thoughts will get me through.

OP posts:
WongTobyWong · 05/01/2016 01:11

I'm so sorry, I've been where you are and its brutal. We did go on to have a healthy baby in the end and I hope for the same for you. God bless.

KittyandTeal · 05/01/2016 08:25

Gosh how awful that they put you in the 'normal' antenatal waiting room, that's really poor form.

Yes I've come across those very hardcore anti abortion websites, I was so angry at the time that it had little effect other than making me worse!

You will have massive ups and downs, be kind and gentle with yourself.

Have you considered counselling once you have got through all the medical stuff? It might be worth thinking about

Original poster
ClaireK1003 · 09/01/2016 22:42

Well a little update, I received the dreaded phone call from the hospital on Friday to confirm the baby has Edwards syndrome. I wanted to know so they told me she's a little girl.

I have an appointment Monday and possibly going back to hospital Tuesday for the termination.

I'm staying strong and just trying to keep busy. I'm really hoping next time will be 4th time lucky and we'll have our much longed for baby.

Just a bit worried about how much pain I'll be in afterwards

OP posts:
Booboostwo · 09/01/2016 23:58

I am very sorry you are in this position. I wish you all the courage for the coming week and happier news in the future. Flowers

Original poster
ClaireK1003 · 10/01/2016 08:16

Thank you for your kind words

OP posts:
KittyandTeal · 10/01/2016 19:16

I'm so sorry you've had such a shitty diagnosis. Our dd2 had Edwards. I'm more than happy to answer any questions you have.

Try to be kind to yourself, it's a really tough time Flowers

TheDisillusionedAnarchist · 11/01/2016 16:18

I'm really sorry, my DD had T18, she died on the 1st January aged 3 months. I am really glad for the time we had with her but I remember the shock of the diagnosis (ours was at 23 weeks gestation)

I hope the termination is as smooth as it possibly can be and you have a chance to say hello and goodbye to your daughter. I wish you so much luck for the future. Be kind to yourself as Kitty says.

amysmummy12345 · 11/01/2016 16:27

So sorry lovely Flowers xxx

Original poster
ClaireK1003 · 11/01/2016 20:23

Thank you for your replies, it's been lovely to read.
I went to the hospital today to take some tablets and I'll be in tomorrow.
Had the most socially awkward doctor who thought it was good to tell me that actually my previous miscarriages wouldn't have even been logged if she had her way and banned at home pregnancy tests and the fact that 200,000 of these operations are done a year.... Errrrm thanks?
Oh and she's only 5cms... And? That makes me feel no better about this scenario what size she is. I've lost birthdays, first days at school, first haircuts,everything and to them it's science they just don't get that this is my child.
The midwives were lovely though and seemed to get it more.

Im drawing strength from knowing you lovelies are here and can relate.

I'm so sorry for your loss TheDisillusionedAnarchist, life seems very unfair sometimes doesn't it

OP posts:
KittyandTeal · 12/01/2016 08:19

Thinking of you today. I hope it goes as well as possible.

That doc sounds a bit nuts! How on earth is any of that going to make you feel better!? I hope the midwives are more gentle with you, I'm sure they will be. They see the front line of tfmr.

Original poster
ClaireK1003 · 12/01/2016 19:01

I'm home and recovering well, just a bit sore when I sit down. Feels a bit like the female equivalent of being kicked in the balls I imagine.
All the staff were lovely and the theatre staff let me have a good cry before settling me onto the bed.
All over in a flash, feeling a mixture of emptiness that she's gone and I'll never know her and relief that she's at peace.
I've got the rest of the week off work so I'm hoping I'll be OK by Monday.

OP posts:
KittyandTeal · 12/01/2016 19:20

I'm glad it was straight forward and as calm as it can be.

Don't rush to go back to work. I told my hard is be back in 2 weeks, I was definitely not ready (luckily she did an internal Hmm and nodded telling me to just let her know when I was ready)

I took 6 weeks and then a further 6 on phased return. Don't rush yourself.

Booboostwo · 13/01/2016 12:32

RIP little baby. Flowers and hugs OP, look after yourself.

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