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Nuchal scan shows high risk for downs-advice please anyone.

49 replies

catj · 07/09/2005 14:18

Went for 12wk scan this morning and was told risk of DS is 1 in 14 (age risk 1 in 222 I'm 34 & fluid measured 3.3). Have decided not to have amnio etc as won't change our minds. Just needed some words of wisdom from anyone who's been there.

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catj · 08/09/2005 00:49

Thank you CP. In some ways I wish we had stuck to our decision and not known but we can't change that now. It is only an indicator of risk worked out by a computer and the midwife we spoke to said they get it right 85-90% of the time so who can tell? Not that I mind either way we'll deal with whatever happens when it does and I'm fortunate that I have a lot of family nearby who will help. I'm not particularly upset,my hormones keep kicking in but when I think rationally it doesn't really bother me that much.

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Rachey1969 · 08/09/2005 06:31

I've just read this thread and it really pulled at my heartstrings, I'm 36 and pregnant with my 4th - I refused the tests because I just can't cope with '1 in x' risks and the worry (we don't get nuchal scans free anyway). I also didn't want an amnio. My bf just lost a baby at 17 weeks due to gross abnormalities and her amnio was clear (it wasn't chromosonal- there are far worse things!). Obviously nothing stops you worrying! I wish you all the best Catj and Thomcat, every time I read one of your posts about your dd, it brings tears to my eyes - you sound so loving!

flamesparrow · 08/09/2005 07:57

I've just read all this, and Thomcat, I just wanted to say that any post I read where you talk about Lottie, it always makes my heart swell.

I love my DD with all my heart, but I never seem to have that pure energetic passion that you do. You are truly in love with her.

I'd love to meet both of you (but I have a feeling you live oodles of miles away) - I feel like I'd come away a better person just for knowing you.

Even when times are tough and you are scared, you never lose that faith and love in her.

You are one of the reasons that I went to my nuchal scan not caring about the results (I wanted the scan to see my baby, and nuchal was the only option ) - I felt that yes, a positive result would be hard, but so so rewarding if it could be anything like you and Lottie.

Sorry for crashing thread and getting a tad emotional ... I just wanted you to know.

Toothache · 08/09/2005 08:59

Thomcat - You've GOT to stop this.... I'm crying at work now!

Well done Catj for deciding not to go ahead with the amnio. I refused testing for much the same reason as you..... it wouldn't have altered my decision to continue with the pregnancy.

Congratulations! Welcome to MN and I look forward to hearing the birth announcement in 6mths.

eidsvold · 08/09/2005 11:25

sorry to hear what should be a good time is a worrying time. My dd1 has ds and we knew before she was born that she would probably have down syndrome given the heart defect they detected in the 20 week scan - we chose not to have an amnio then and our dd1 was born with ds.( In fact the cardiologist told us it would have been very rare for her to be born without ds - think it was 8/10 children who have this heart defect had ds also) She is about the same age as TC's little one.

I now also have another dd who is almost 10 months old and we had a raised risk - and again I chose not to have an amnio. Having said that I did not have nucal scans done with either. We decided not to have an amnio as it would not have changed the outcome and I did not want to put myself through that. There were times where we wondered had we done the right thing and worried about what our life would be like. Sure there are tough times but they seem to pale into insignificance when measured against the amazing times.

I love both dds - but dd1 is just amazing - our time with her has truly been incredible and she contantly amazes us each day with her capacity for learning, love, compassion, humour and sheer joy at being alive. I no longer take anything for granted and whilst being amazed with dd1 - I am also constantly amazed at how effortless development and growth is for dd2 - who does not have special needs. I am sure I am evolving into a better person for having my dd1 in my life.

I have seen the impact she has had and continues to have on other people and it is just incredible. SOme of my tough pupils ( when I was teaching in Essex) were just amazed by her and taken with her. It was funny to watch these rough tough 'ard lads gooing and cooing over her and she just loved it.

Have a pic online of my two ....


feel free to CAT me if you need to talk further.

Marina · 08/09/2005 11:38

Catj, wishing you all the best for the remainder of your pregnancy. You are in a very good place to receive masses of positive support from mums like TC and Eidsvold, and also from those of us who have chosen the no-invasive-screening route through our pregnancies. XXX

Lonelymum · 08/09/2005 11:48

I know how you are feeling right now. I had a high risk of DS with my last child and decided not to have amnio because I had had a miscarriage scare earlier. Anyway, like you, I couldn't have had a termination whatever the result. I have to say, I was never completely happy with the prospect and hid my pregnancy as much as possible (until about 34 weeks!) so people wouldn't congratulate me and then later have to "try and find nice things to say about a DS baby" Sorry, I know this is harsh, and especially for anyone with a DS baby, but you know how people can be? I dreaded other people's reactions more than anything, how silly was that?

Anyway, all was well in the end and ds3 is fine. But all would have been well in the end if he had had DS - I know that now.

Good luck with your pregnancy. Thomcat and others here have something far more constructive to sy to you than me, but I wanted you to know that others have been where you are now.

babyonboard · 08/09/2005 16:56

has anyone had an 'echogenic focus' detected on the scan?

eidsvold · 08/09/2005 23:11

babyonboard I had that for my second pregnancy. Is there anything you wanted to know in particular. Basically they said to us it increased our risk slightly for having another child with down syndrome BUT were very quick to assure us that these focii are found quite regularly and usually amount to nothing. Had they found other markers - soft or hard they may have been a bit more concerned.

THe echogenic focus is a very 'soft' marker and found more and more these days with the increasing sophistication of the scanning equipment. They had some information printed as they were having so many of these found.

My dd2 was born without down syndrome and they believe the spot disappeared by the time of her birth.

I am sure there have been other threads on this topic if you want to do a search - I will try and do one later.w

VickiB · 09/09/2005 13:59

We went for our Nuchal Scan at 12 weeks and were told we had a raised risk for DS. This is our second baby and we didn't have a Nuchal Fold scan for the first.
We talked and talked this through and decided that were weren't going to go for the Amnio because:
a) The Nuchal Fold Scan is not a diagnostic test - its only a risk factor.
b) How would we feel if we had risked the amnio, miscarried and then discovered that the results were clear? Emotionally I don't think I could cope.
c)Everyones risk is 50/50, reagardless. Either you are carrying a full healthy child or not (whatever that means)!

So... we're going with the baby we've made and we're loving them whatever. I cannot imagine that I would love them any less than the beautiful girl i've already got. We've been blessed with her and wouldn't give up on her if something happened and she needed extra care, so we're not giving up on her brother or sister.

babyonboard · 09/09/2005 16:42

just wondering..i did start a thread on it a while ago, but thought maybe some of you might have missed it. They told us it was a very soft and isolated marker. I have a meeting with a foetal medicine midwife in a couple of weeks, which has taken 10 weeks to get! i'm not too concerned really, just wondering if it can have any adverse effects on the baby.

catj · 09/09/2005 19:22

VickiB that's exactly the decision we have come to for the same reasons. At the end of the day they can only tell you what they see at that small moment in time and until they can tell me 100% there is a problem I'm going to forget about it. Whatever happens it is still our baby and it really doesn't bother me.

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Thomcat · 13/09/2005 20:19

Catj, just checking in, how's things going?

catj · 14/09/2005 10:02

Thanks for asking after me.
All's well-not stressing any more. Have decided just to drift along as I normally do & virtually ignore what they say until they come up with something definite!!!! I confess I have hired a doppler for a month cos I'm not seeing the midwife again til 5/10.

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Thomcat · 14/09/2005 10:45

Glad you're okay
Have a fab pregnancy.
When are you due again?

catj · 14/09/2005 12:09

I worked out 21/03,mw says 26/03 scan says 22/03 so take your pick! Some time at the end of march. Will be strange as the other 3 are summer babies.

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Thomcat · 14/09/2005 12:49

LOL, well good luck for end of March sometime
i'm due 22 Dec! What fun

catj · 14/09/2005 12:54

A christmas baby! I'll keep a look out for the announcement.

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solucky · 22/08/2006 14:19

hoping for words of wisdom, please.
I am 12+5 weeks pregnant with non identical twins - absolutely delighted. Had nuchal on Weds, twin1 normal but twin2 result of 6.5. Local hospital sent us to Kings College Hosp. in London. Loads of scans, seen by loads of experts, each giving worse news than the last.
They said twin2 is much smaller, has heart defect, probably means Edwards syndrome, (usually babies with this die inside or shortly after birth).
Basically we were told to give twin1 best chance we must kill twin2 while it is still very small.(injection of gas into heart)
But this could cause miscarriage, or we wait and see if twin2 dies, if it dies late in the pregnancy it could cause miscarriage.
My husband is focused on best for twin1, but I don't want to give up on twin2, was so delighted to be having twins.
Where there's life there's hope - it was moving around on scan, heart beat strong. What if doctors mistaken, or a miracle happens.
Already have son 6yr, daughter 4yrs, so am trying to remember how very lucky I am.

UCM · 22/08/2006 15:05

I have no words of wisdom, but I wish you lots of luck. I guarantee someone will be along soon who will be able to help you.

Olihan · 22/08/2006 15:27

Solucky, I've started you a thread of your own for this, to bring it to more people's attention - hope that was okay. It's here

Jo1220 · 24/08/2008 23:06

Hey all!
found all posts so reasurring and helpful.
after falling pregnant at 17, termination was not an option. At 11+4 weeks i had my first scan and had a gap of 4.5 i then got my risk factor of 1 in 5 and was told the test showed more links to edwards which is something like 50% die in the womb, and none live full lives.or it could be Down syndrome, which isn't an issue atal to us. We decided straight from the start amino is not an option as putting my babies life at risk just for curiosity isn't right.I had my 20 week scan 3 weeks ago and everything looked good(fingers crossed).I've felt alot of kicks and movements which is also a positive. Im so scared.. but i know ive got to be brave and keep positive. If anyone else has had similar experiance, i would be so grateful for any info ... thanks mummi's xx

jimjamshaslefttheyurt · 24/08/2008 23:24

Jo1220 - you could post on the special needs board. There is someone there who knew before her baby was born that she was likely to have Down's syndrome (and she did). Her dd did show some signs of DS at the 20 week scan, so I think everything looking good there is a good sign (they will have checked your baby carefully following the nuchal).

I have read a lovely website dedicated to a little boy who was born with Patau's syndrome (trisomy 13) which is similar in severity to Edward's. Of course I cannot find it now, but I'll try and look again - it was lovely though.

Will be thinking of you.

eidsvold · 26/08/2008 10:49

Hiya Jo - I am probably the person jimjams is talking about. There are pics of dd1 on my profile and I have mentioned a little of our story further down. If you search you can find tonnes I have written about dd1. Feel free to contact me if you need to ask any questions.

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