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Original poster

Large Nuchal Translucency at first scan :'( Who else has been through this?

40 replies

BeatTheOdds · 29/07/2012 23:19

11 weeks and measuring 3.8 We went from the happiest couple in the world to anxious, depressed and crying in the space of an afternoon. What are our chances of a healthy baby? We still haven't told either of our parents because we were waiting for the scan to show everything was all right. Sad Now what? Just looking at the picture of little baby with he big halo round the neck and head makes my heart break.

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Purplefan · 29/07/2012 23:33

Hi, have you had your blood result as well?

My baby, DD2 had a Nuchal measurement of 10mm.. which is very large and they told us that she was incompatible with life Shock, it felt like someone had pulled a rug from underneath us and the world fell apart..... we had a CVS as the odds were 1 in 2!!! She does have a Chromosome disorder(?) she has turners syndrome and she is a happy healthy 16 month old now!! We decided that what will be will be and if she was strong enough for this world she would make it.

Try not to worry too much (easier said than done), don't google information and try to stick with the facts. There is every chance that your baby will be very healthy!! Good luck and feel free to ask any more questions.

Original poster
BeatTheOdds · 29/07/2012 23:52

Thank you purple. No we haven't had the blood test done yet. Google has pretty much been an obsession since we got the result unfortunately. But it doesn't actually change anything does it. How many weeks were you when they measured 10mm? So pleased for you that your DD is healthy. How did you cope through the pregnancy not knowing how it would turn out? Did you tell people early on? Sorry for all the questions. Just tearing our hair out at the moment.

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Purplefan · 30/07/2012 09:44

Hi Beattheodds, how are you today? I hope you managed to get some sleep. Wink. Once we had the CVS, it was 3 days until we got the result...it was tough but I just tried to remain as calm as possible and stay away from the computer (well google) mumsnet was a great source of support and I did tell close family and friends (+ my boss as needed the time off work). Also when I had a scan at the cvs which was about 4 days after the news...the fluid had reduced to 8mm.

When we got the result, my world was in a spin again as I had never heard of turners syndrome. We met a genetic counselor and talked things through to get a bigger picture. The statistics were bleak for her to survive the pregnancy, but we somehow found an inner strength and continued with the pregnancy with a positive approach. Once the decission to continue was made I never looked back! My Dh was a great strength. A few weeks later a friend of a friend introduced me to a friend of hers that had a daughter with turners and we had a long converstion on the telepone.

What have they suggested for you? Usually when they do the nuchal scan they combine it with a blood test to give you the odds of a chromosome disorder. Stay strong and feel free to ask away with the questions Wink

phoenixrose314 · 30/07/2012 18:24

I've been thinking of you, hope you're feeling a little better today xx

katiecubs · 30/07/2012 21:41

Me - gosh it's horrible isn't it. Our nuchal was 7mm and not good news but yours is only just on the high side so don't lose hope.

Pop over to antenatal tests/choices as there are lots of ladies there who have been through the same and can advise.

When will you get your risk numbers and what have you been advised is the next step? Really crossing my fingers for a positive outcome x

Original poster
BeatTheOdds · 31/07/2012 00:57

Hi everyone, thanks so much for your support. Sorry to hear that Katie. We've had a terrible day. First Nuchal measurement was either really inaccurate or the problem has got worse quickly. Now reading 5mm Sad and chance is now 1/2 of having a healthy baby. Consultant is great, fortunately. And DH has been a rock even though it's very tough for him too. Will know more as we go on. CVS next step. Will check out the other topics you suggest. Thanks again everyone for your posts. DH says hi and thanks also.

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katiecubs · 31/07/2012 10:38

Oh beattheodds I'm so sorry :(

Glad you are getting good care though. The cvs was ok, didn't find it very painful. The worst is the waiting and not knowing. Do you have a date yet?

Take care of yourselves xx

Original poster
BeatTheOdds · 31/07/2012 11:57

CVS is this week and we ought to have the results by Friday. The medical professionals have really been on our side and I'm very impressed at how quickly they've been sorting things out for us, squeezing us in between appointments all over the place. I realise that is something to be very grateful for. As for me, I managed to vomit my way through last night. I'm guessing it's the stress and whatever causes morning sickness combined cos I've not done that before. Today I just feel awful. I always thought I'd be the sort of person who'd cope a bit better than this! But I never knew how passionate it was possible to be over an unborn child until now.
Anyway, the next steps are in motion so there's nothing more I can do about it at the moment except carry on and hope for the best.

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katiecubs · 31/07/2012 12:03

You poor thing, i don't think anyone understands how attached you become to your child so early on until you actually become pregnant.

I'm keeping everything crossed for you for Friday - i know the odds are not on your side with a high measurment BUT there are plenty of stories of hope out there, people with even higher measurments have got the all clear so stay positive xxx

Purplefan · 31/07/2012 12:35

Thinking of you. Try and stay strong... we are here if you need us! Good luck for Friday and keep us informed if you can. x

thebabywife · 31/07/2012 13:06

Thinking of you - I hope this week goes as quickly as it can till you get your results

x

freshfruitsalad · 01/08/2012 18:49

Good luck for your results, we were tested positive for Down Syndrome, it was hard to get the news but now I am feeling very positive about it and our new life

MrsReiver · 01/08/2012 21:00

Purplefan - I was wearing purple on Monday!

Beattheodds, I will be thinking of you, I'm pleased to hear the medical staff are supporting you through this. All the best for Friday xx

Original poster
BeatTheOdds · 02/08/2012 11:17

Hiya. Well we had the CVS. I don't want to put anyone off it who reads this but I found it very unpleasant and vomited afterwards. I was in a lot of pain and couldn't leave the hospital for an hour. Although I think that's unusual. I've since learned that if this baby does have an abnormality, we'd be offered a CVS for all future pregnancies. Really don't want to go through that again. And worse it suggests to me that we'd be at an increased risk every time. And I thought this kind of thing was just an accidental one-off that just happens some times. I'm finding the idea that we'd be at an increased risk with all pregnancies very difficult.
The nurses were great though, very chatty and joking which I found very reassuring.
fresh, I'm glad you're settled in your plans and feeling positive. I looked at the Downs website and all the children there look beautiful. I'd be proud to be a mother to any of them. Makes me very undecided about what we would do in your situation.
Unfortunately the nuchal translucency looks significantly worse and the fluid is all around the baby's head and body Sad Sad Sad The consultant said it was possible it was transient but I asked if it was a bad sign and he said it wasn't good. I get the sense that our chances have dropped to almost nil and that this is not even compatible with life. I feel as if we're only waiting for the CVS results because we've got the samples. DH has not given up hope and is keeping things going. Keeps looking up more benign syndromes in the hope it's one of them instead of Edwards or a major heart defect or something like that.
I just feel like I'm living in some kind of depressed limbo and can't think about anything else. Results on Monday not Friday apparently. So we've got the weekend to get through yet. Thanks for all your posts. It helps to know people are thinking of us.

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katiecubs · 02/08/2012 12:59

Hi Beattheodds, am really sorry to hear you had such a bad experinece - hope you are feeling a little better now?

I too was offered an immediate CVS in my last pregnancy but didn't want to take that risk unfounded. I waited for the NT results to come back and was reassured when they were in the thousands that i didn't need further testing. I went on to have a lovely son (nealry 2) and am now pregnant again with no concerns so far. I think often these things are a 'one off' and just bad luck so try not to worry too much about it happening again.

I hope the wait passes quickly. I was in the same position as you being almost 100% sure of bad news but there are cases of things turning out ok even in the worst of predicaments, i hope this is the case with you x

BuntyCollocks · 02/08/2012 14:01

What a worrying time for you. :( I do hope you get a good result, despite it all. Will be watching for your update and thinking of you.

Original poster
BeatTheOdds · 02/08/2012 15:57

Good News! We had the first phone call. (amazing since the CVS was only yesterday, I love the NHS!) And baby is clear for Downs, Edwards and Patau. DH has just poured himself a large whiskey (day off for both of us.) Obviously there are more results to come in and we don't know everything is 100% okay yet, and I'm worried about what else such a lot of fluid on the baby could mean, but we're allowing ourselves to feel a large dose of relief all the same. Thank you for all your support. Still feeling anxious, but also as if a massive weight has been lifted. I know other people in the same position would have killed for this result so I'm sorry that I'm not celebrating just yet because the Nuchal is so severe. But hope has been restored. Will keep you posted. With any luck, we'll have a healthy baby.

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BuntyCollocks · 02/08/2012 16:23

Excellent news! Fingers crossed for even more to come.

JennerOSity · 02/08/2012 16:47

My friend had this and got a completely healthy baby, despite the worry. It can happen. Good luck.

katiecubs · 02/08/2012 20:25

Wow you did beattheodds! that's fantastic news - keeping everything crossed that you get more of the same and everything with the baby is ok x

Purplefan · 03/08/2012 09:16

Beattheodds that is absolutely fantastic news and you do deserve to have a very large dose of relief and DH the whiskey!! Wink I remember having my CVS, it was not a gr8 experience and I came over really dizzy and faint - everyone reacts differently though!
Fingers crossed for more good news to come your way. Keep us posted and make sure you are resting after your CVS. x

phoenixrose314 · 03/08/2012 09:41

Wow, I am so glad to hear that, you must be feeling so much relief. Good luck for future tests, will be thinking of you xx

AKMD · 03/08/2012 10:26

That's really good news and great that the results came through so quickly. I'm sure it will eb a tough weekend for you but fingers crossed for more good news on Monday.

panicnotanymore · 03/08/2012 13:50

I'm so happy for you - your last post made me a little watery eyed. Wishing you the very best of luck for the next step x

MrsReiver · 06/08/2012 11:21

Hoping for more good news this week xxx

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