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

increased nuchal translucency

38 replies

fabbymum · 27/09/2008 21:42

HI there, had 12 week scan on thur and was told baby has nuchal fold of 6.5mm-v.high i know. I have had 2 perfectly healthy pregnancies and I am 27 yrs old. Go for more detailed scan on tue and will be offered a CVS. This is pure hell for us and all i can do is cry, cry, cry!! anyone had such a high reading....details pls!!! thankyou in advance for sharing your personal stories xx

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mumoverseas · 28/09/2008 06:38

no experience of high nuchal measurement but couldn't read this and not post. I know how worried you must be, I am 18 weeks and had my NT scan at 12 weeks and was worried sick because of my age (40!) My measurement was lower than yours and I decided against any further tests as found it too stressful, but do wonder if it was the right decision. Did they give you a risk assessment, ie 1 in *? Maybe they are waiting until after the second scan. Will be thinking of you on Tuesday and hope all goes well,

skydancer1 · 28/09/2008 06:53

I'm sorry about your scare fabbymum. Again no personal experience, although I do have a friend who had a 12 week scan revealing a larger nuchal fold and was told she had a one in 30 chance of disability but the child turned out perfectly normal. My friend was so upset by scan she actually chose not to have any further testing/scans after 12 weeks (believing that the tests were a terrible stress inducing and scare-mongering thing) but I know if it had been me I would have done as you are doing Tuesday. I hope you get more posters after me with some reassuring experience and wishing you all the best with your pregnancy.

skydancer1 · 28/09/2008 09:30

just bumping

skydancer1 · 28/09/2008 14:38

FM, did the people scanning you or any hospital staff give you any information about that measurement or did they just leave you to wonder? I'm sorry you are so upset. I hope you write again Tuesday when you know more.

Mandy73 · 28/09/2008 14:47

fabbymum just to say I can understand how you must be feeling right now.
I had the nuchal scan 2,5 weeks ago and although the fold was in normal range (2,7) my bloods were freakishly bad (technician had never seen worse, she seemed in shock) and we were given a 1 in 3 risk of DS (I'm 35, no previous kids).
They couldn't perform the CVS when planned five days later (dodgy placenta location) so we've have had to wait until now to have an amnio (going in tomorrow, results by Wed).

You are so right: It is pure hell. The wait has been the worst emotional roller coaster of our lives but ultimately we are grateful the risks were spotted and investigated now and not in two or even six months time. We both grew up with younger relatives with severe SN and sadly have no sunshine stories to tell. Although we know there are no guarantees in life and disability can happen to anyone at any time we are both very pro screening - but we do have the utmost respect and admiration for families affected by DS and other SN.

Will be thinking of you. There are many positive stories around about increased measurements. Do look after each other - no reaction to this is wrong.
It sounds very crass but try to keep as busy as possible until you know more - it does help you sleep.
xx

skydancer1 · 30/09/2008 10:26

Hi fabbymum. Thinking of you today and hope all goes well with your tests and not too awfully stressful for you. I hope you have your DP or friend to go with you.

fabbymum · 30/09/2008 18:00

thankyou for your messge. not good news....nuchal fluid has increased to 9.4 mm and baby has hydrops which means the fluid is now inside the baby...i am also res neg. so that may possibly lead to slight complications. scan again next tue. This is just complete hell. On the up, the baby was moving and heartbeat good so I hope he/she is strong enough to fight this battle.

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skydancer1 · 30/09/2008 19:00

I'm sorry it's so hellish for you. I am also rhesus negative and my ds was positive. Actaully I have heard of hydrops being caused by this set up of blood incompatibility (I wonder if my son was born with breathing problems and jaundice because of it - despite me taking my anti-D injections in the 3rd trimester ). However, even if this is the case with your baby I have heard of it being treatable in-utero. I am really wishing you the best and your little fighter.

fabbymum · 30/09/2008 19:50

skydancer-what do you mean DS? I'm new to all this and don't understand all the lingo! How is your son now and what were your complictions thru pregnancy.

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mrslurkalot · 30/09/2008 20:09

Hi fabbymum, my heart goes out to you. I had increased risk of downs and edwards syndrome in both my pregnancies. I had an amnio 1st time and CVS the second. In my last pregnancy I had a 1:25 risk of downs and 1:8 of edwards. It shook our world to the foundations, and seems so cruel that you just get out of the 'danger' zone of the 1st 12 weeks and then have a bomb shell. In my case neither of my children had either syndrome.
If you need to cry then cry, Mandy73 is right, there is no right way to feel or react.
I cannot recommend ARC stongly enough (arc-uk.org) they talked to me until I really understood my results and were such a comfort.

Take care of each other x

skydancer1 · 30/09/2008 21:47

Hi fabbymum DS stands for darling son (DD for darling daughter, DH darling husband etc.).

My son is fine now. I very fortunately didn't actually have any complications in my pregnancy (though I was always extremely worried because I'm a worrier and I conceived at 40 - also I have a brother with learning disabilities (although that was a very rare chromosonal disorder and not a genetic thing or age related thing in my mother's case).

My son had a difficult birth (born back to back, very long end stage needing ventouse (I think they'd have given me a caesarean if they'd known his birth position before trying ventouse). But he was also born three weeks early. Not technically premature but only just within normal parameters (38 weeks exactly) - so a number of things could have contributed to him being born with fluid on lungs, rapid breathing and jaundice (needing 8 days in the SCBU (special care baby unit)). I suppose it could have been related to the birth trauma itself, or he could have somehow been effected by something to do with me being rhesus negative (I'm by no means medically knowledgeable so have no firm opinion, I have just heard of someone whose baby had some problems with fluid build up/jaundice because of that)

skydancer1 · 30/09/2008 21:51

I meant 37 weeks. never could count! I'm glad to hear mrslurkalot (funny name ) with her experience of poor results turning out well in the end. I can so imagine the distress though of waiting to hear/know whether your child is ok. Love to all in the same situation.

fabbymum · 05/10/2008 16:58

i hve now opted for a cvs which is tomorrow so even though the results will take 3-7 days, i will get another scan to see if the swelling has increased.

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Mandy73 · 05/10/2008 17:05

fabbymum sending lots of hugs, will be thinking of you tomorrow. It's an insane situation, like all light and colour has gone from the world. Best of luck for tomorrow, take it very easy afterwards - for days if you can and feel like it. Soon you will know more.
xx

fabbymum · 06/10/2008 09:09

thankyou Mandy, how did your amnio go and have you had results yet? let me know how you got on and i will post results of scan later on. I am doing this so that anyone else that is ever in this horrible situation can read this and get a clearer picture for themselves because I've been looking at peoples discussions on this topic and it helps being able to see other peoples outcomes and various options, tests etc... they had to endure or decisions they had to make.

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Mandy73 · 06/10/2008 09:45

fabbymum we got our prel. quick results (by FISH method) on Wednesday. All clear for the three most common chromosomal abnormalities. Some tests & results still to come (my dodgy bloods remain unexplained) but we're v happy to be over this hurdle. Best of luck today. xx

Mandy73 · 06/10/2008 09:48

PS: The actual amino went fine, tried to be v relaxed & didn't actually feel the needle go in or out (he put cold alcohol on my tum which numbed things and also pinched gently under the needle). Bit whacked & sore/uncomfortable afterwards though, stayed in bed for 1,5 days.
What time are you going in today?
xx

CS7 · 06/10/2008 10:27

Hi,

Hmm I'm not sure whether or not to write this.. I'm new here and I didn't want this to be my first post.
I know what hell that is. With my first pregnancy when we went for the scan in February this year, we got a very high nuchal fold reading- 8.1mm and little one was very inactive. I was bewildered because i thought, how could it be? I'm 25y/o. We had CVS which ruled out Downs. The docs said it could be due to an infection or a problem with one of the organs. At 14 weeks we went for a TORCH screen and that ruled out all infections. At 16 weeks we went for an early anomaly scan to check the organs, there they found out Daniel's kidneys weren't developing and it meant his lungs wouldn't develop and he would die once he was born. I couldn't take it in. I went for a second opinion at UCH, same thing, still didn't want to give my baby up. Went for a third opinion with Prof Nikolaides at FMC, and he was as clear as day in telling me that it was a fatal condition and that the kindest thing to do would be to terminate the prenancy. So at 18+5, my little daniel was born. He was perfect. And I'm glad to know we did the best we could for him.
I know it probably doesn't give you much comfort to hear how Daniel's story went and I hope yours ends happier. I truly pray so.
After all that and thinking that's my life over, I'm pg again and this little one had a nuchal reading of 1.3mm.

I'm here to talk if anyone needs to.

cupsoftea · 06/10/2008 10:34

Hi fabbymum - I had a nuchal fold too big in two pregs - 5.something mm. Blood tests all the wrong amounts as well (had this when nuchal fold ok as well) Had cvs & amnio for one preg but refused invasive tests for the others. All was ok. It's just probabilities and not the actuality of the situation - you will know this with the invasive tests.

Mandy - fingers crossed for you xxx

mumoverseas · 06/10/2008 12:05

fabbymummy - hope all goes ok at your cvs and you get a good result

cs7 - so sorry to read your story, I can't imagine how hard that must have been to deal with and imagine you must be worried now? How many weeks pregnant are you now?

snackattack · 06/10/2008 12:10

fabbymummy - I had a 1:2 chance of Downs and Edwards in my second pregnancy and after CVS, the results were all clear. My dd is now 4 and completely healthy. Don't give up hope, and my thoughts are with you at this really hard time....very best of luck.
Mandy - very good luck to you too....

xxx

CS7 · 06/10/2008 12:44

Hi mumoverseas, I'm 15weeks now and seeing little one very active during the nuchal fold scan and also the low reading was very reassuring. I do have a wobble over what happened once in a while and I don't view scans with the same innocence as i did but i'm doing fine (I think )- thanks for asking.

mumoverseas · 07/10/2008 05:40

that sounds very positive CS7 although I'm no expert. I do sort of understand, had a miscarriage a few years ago and until that happened, I very stupidly (and ignorantly!) thought that this only happened to people you don't know. Only then did I realise how common it is. When I was pregnant with DD (now 2) I was anxious the whole time and didn't relax once until she was born! I'm now nearly 20 weeks and finally starting to relax. The first 12 weeks were a nightmare as I started bleeding again at 6 to 8 weeks. I've realised however, you have to be positive, otherwise you will just self-destruct. Will be thinking of you and keeping my fingers crossed for you and loads of other mummies to be on here.

fabbymum · 07/10/2008 09:49

hi thankyou for your responses. Had my cvs yest and it was very uncomfortable, i felt the needle move everytime. Anyway scan didn't go well yet again. Strong heartbeat and the poor soul was moving around quite the thing but swelling has increased to 12mm now. I'm just numb with it now and haven't even cried in the last 24 hours. Its awful to think the wee one is so determined to keep going even though the outcome is apparent, I almost wish things would end, as heartbreaking as it will be when it does. I'm angry at my stupid body for allowing it to go on.
CS7 that story was awful but so pleased you are expecting again and things are going right for you this time. Mumoverseas I was exactly the same as you, completely unaware these things can happen to the likes of me, it happens to other people. My other 2 kids were healthy pregnancies and even waiting on the results of the double tests, I had no worries whatsoever, and of course they were fine but how dumb was I to think like that. Mandy, thats great bout your results, what a relief. I'm waiting on blood results today for other things to rule out and should get cvs results by fri. xx

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CS7 · 07/10/2008 12:55

Hi fabbymum, nothing i or anyone can say will make you feel better. Though the rapid increase in your little one's NT makes me (in my ignorance) wonder if its an infection and your little one is poorly. I don't want to give you false hope but i remember at the time, the dr said if high NTs were due to infections, that it could be treatable. Praying for you that all is okay and that you have strength, whatever happens.

Mumoverseas, I'm so sorry to hear of your miscarriage. I'm so glad things are going okay with this pregnancy and also that you have a healthy 2 year old. You're right, no one ever thinks it could happen to them till things go wrong. As you say, we must keep positive.
Have you had your 20wk scan yet?

I'm having mine in 2 and half weeks - i couldn't wait till 20 weeks and asked to have it pulled forward. I'm a bit scared and praying it goes well.