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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.

OP posts:
Thomcat · 07/09/2005 14:29

oh babes.

well first off congrats on making a hard decision, whatever it was, you made the decision so a big part of the ordeal that is testing etc, is over with.

Secondly congrats on your decision to NOT go ahead with an amnio and have the baby no matter what. Whatever happens I can promise you it's a decision, now you've made it, you'll never regret.

My little girl has Down's syndrome and she's just the best. Oh catj, I know we all say that, but, God how can I describe how wonderful life is with her in it, how do i do her justice????

She is not just a ray of sunshine, she is the sunshine.

She's so pretty, so cute, so cheeky, so strongwilled, so naughty, so loving, so giving, so, so amazing.

Can I go on? if you want to hear more I'll gladly tell you more about her.

Having a child with SN's is challenging but so, so rewarding. Every little thing they accomplish is celebrated 10fold. You can never imagine the joy till you live it. You get back so much more than it's ever possible to put in. You learn so much, you become a better person. While i don't like Lottie to be treated any differently, she is, becasue she's special and she brings out a different side to people that make them act differently.

if I could show you through the window of our lives and you could peep in at her you'd know.

What else can I tell you? what else might you need or like to know.

Thomcat · 07/09/2005 14:31

Would you like to see pics of her?
Is there anything i can post you on DS?

Also, sorry, you may well not have a child with DS. Your chances are not that bad. I'm pregnant again and my nuchal was much higher than that so I was much more likely to have a child with DS again, but that's not actually the case as we had a CVS this 2nd time round as needed to know for sure this time, and this baby won't have DS after all.

katierocket · 07/09/2005 14:35

sorry, no direct experience but Thomcat's little Lottie is an angel and she is a fab mumsnetter who can give you loads of advice.

1 in 14 is still good odds.

trace2 · 07/09/2005 14:36

oh thomcat you just made me cry because of all the love you have to give.

catj good luck with every thing, if you can give same love as thomcat you will be fine.

Lizzylou · 07/09/2005 14:36

Fantastic and heartfelt posts Thomcat, crying now!

catj · 07/09/2005 14:37

Thank you. Its helped me feel better. I used help a riding therapist in a private SN school so I have some idea. I don't know if you went thru the same but I've got such mixed emotions cos I also have 3 "normal" daughters.I hate using that word cos who knows what "normal" is. (I hope I haven't offended you). TBH she sounds just like my twins!!

OP posts:
SherlockLGJ · 07/09/2005 14:38


Every time you post about Lottie you make me cry, your love for her and the love she returns to you all, 100 fold, shines through in every post.


Lottie is a little poppet. If TC can find the train thread she should post it for you.

Well done for making the decision you have made, and as TC said whilst you may have a DS baby you may not.

Ds went to school today and there is a little DS lad in reception who just radiated love and warmth and had the other children looking out for him, and they had only known him a few minutes.

much love


LadyTophamHatt · 07/09/2005 14:40

catj, I had in 16 result for DS with our ds2 but our measurement was 6.1 (which seem odd compared to yours.)

Ds2 was born without any SN and is a bright and happy 4yr now.

Also, I just have to say what a beautiful post from you, Thomcat.

"She is not just a ray of sunshine, she is the sunshine" is the most amazing thing I have ever read on here from a mum talking about her child.

Catj, listen to Thomcat as nothing I can say touches her post with a barge pole.


catj · 07/09/2005 14:40

Have to say I cried too but I am overloaded with hormones. Don't worry I was smiling at your post!

OP posts:
clary · 07/09/2005 14:43

Catj Thomcat is the woman on this, agree with others, she is a star and so is Lottie. Lovely post TC.
However, as she also says, 1 in 14 is still low odds in relative terms. My sister had 1 in 1500 on a nuchal scan and her dd has DS. that doesn?t help, just trying to show the test is inconclusive.
My niece is a lovely lovely girl btw, none of us would be without her.

catj · 07/09/2005 14:44

Thank you everyone. I'm feeling much better already. I have only just discovered MN & already I'm addicted but so glad about it!!! My dh & I are very much whatever will be will be and we'll deal with things as they crop up.

OP posts:
Thomcat · 07/09/2005 14:50

oh FFS, now I'm all treary! What are we like.

Listen Catj, re this having 3 "normal' children, or NT (neurologically typical) if you're being pc! If this baby has SN's then yes that will hurt, it'll always be a bit bittersweet, the fact that things are so much harder for your little new one will always be there.

Listen I'm terrified of having a kid without special needs now! This is all I know and it'll be so weird when the new one just does stuff without being taught over and over!

but that's the joy of it too. it really is catj. And if this child has SN's i bet you everything I have (except my kds) that he or she will be the most popular and loved member of your family. Lottie is stupidly popular with other kids, to the extent it's a bit much for her sometimes. they all want to touch and be with her and fight over who sits next to her. To quote a mother at the school, 'if you don't eat your dinner you won't be allowed to see Lottie'.

So the bittersweet thing will exist. But your youngest child will stay your youngest child in every sense of the word iykwim. Most kids grow up so fast, I've had my little girl stay a little girl for so long, it's a plus side really.

Am I making sense?

bunny2 · 07/09/2005 14:54

catj, I was in a similar situation last May. We had tried to conceive #2 for ages and were so happy when I finally got to 12 wks (after miscarrying twice). Then we had the nuchal scan and my risk for abnormalities was adjusted to 1:40. There was no way we were going to opt for an amnio so we just kept our fingers tightly crossed for the next 6 months. It was extremely hard but the hospital were really supportive and scanned me thoroughly at 18 and 20 weeks. During these scans, no markers were found and the heart looked normal so this gave us hope that all would be ok. I relaxed a bit until the last few weeks of pregnancy when I started to get really nervous again. Anyway I eventually gave birth last November to an absolutely perfect, healtyh and beautiful baby girl. She is now 9 months and fantastic in every way. I look at her every day and thank God I didnt risk her life by having an amnio.

I remember my feelings after the nuchal - I was devastated and scared as I an sure are you. I found Mumsnet was a huge help and support.


munz · 07/09/2005 15:00

not had any experience of it. but wanted to add my support for u honney. (((hugs)))

tc - that brought a tear to my eye.

babyonboard · 07/09/2005 15:04

I really don't see the point in some of these tests, if you know it won't affect your feelings about the child.
I guess it is best to be prepared, but I can't help but fell they often cause unneccesary worry.
I actually missed my nuchal scan as my midwife didnt book me in in time, but my bloods showed the lowest risk level for ds.

milward · 07/09/2005 15:07

Have had this and am currently going through this.
My dd3 had a nucahl neck of 5mm - and a risk of 1 in 5 I think. I had a cvs that showed abnormailties. I then had an amnio at 14 weeks that showed everything ok at 19 weeks and the abnormalities where in the placenta - a condition called confined placental mosaicism. Huge stress here.

My ds4 - due in 2 weeks also had a large nuchal neck - 1 in 20 risk. Plus triple test showed a high risk. Decided no cvs & no amnio. Will see what the outcome will be - we will be happy whatever and will welcome our baby into the world the same as we did with our others.

He'll have a great time with his big sisters and we will do all we can to make a happy fulfilled time. There might be no problems but my doctors keep going on about downs so we are thinking of this alot.

It was hard for our doctor to understand that we didn't want an amnio and it was really pushed to us - but the risk of miscarriage was one I didn't want. Why have an amnio just to find out what is acceptable for you is how I thought on this.

Take it easy on yourself. I went through stress from 11-19 weeks on this and I'm feeling worried now - but all that is important is that our baby is in good health.

Best wishes xxx

bundle · 07/09/2005 15:07

babyonboard, the quadruple blood test i had indicated a higher than normal risk of a serious genetic problem (edwards syndrome, a life limiting trisomy) & had the result of my amnio been positive for this i would have terminated the pregnancy. the test isn't just looking for DS.

Thomcat · 07/09/2005 15:08

oh and whatever happens, Down's synrome, or not, your baby will still be perfect and healthy and beautiful. it's not something exclusive to NT children! My DD is Sn's but is still perfect. She's got a extra chromosome, there's nothing missing! She is bright, beautiful and healthy, just like any other kid in the world, (well maybe just a teeny bit better than some possibly??!!)

milward · 07/09/2005 15:09

Just to say that I've been greatly helped by Thomcat's posts - thank you so much.

saadia · 07/09/2005 15:11

Just wanted to wish you the best and don't worry. I didn't have any of the tests with ds1 and just thought that whatever happens we'll deal with it.

As everyone else has said, Thomcat really is an inspiration and without wanting to sound corny does show that love conquers all. Her posts always make me smile.

babyonboard · 07/09/2005 15:15

bundle- I thought the nuchal scan was just for downs? I could be wrong though, I didn't really read up on it as I never had one!
We did have a 'soft marker' at the 22 week scan, but were advised it's nothing to worry about, as it was an isolated occurence.
I'm not worried either..I will love the baby just the same, and the results of any tests wouldn't have made me do anything different i don't think.

Thomcat · 07/09/2005 15:19

nucal scans show up the fluid by neck. If lots of fluid it could indicate a chromosome abnormality. DS is one abnormality but there are lots of other things, DS is just the most common.

bundle · 07/09/2005 15:22

sorry I had nuchal combined with bloods for my risk,getting a bit carried away.

inglis · 07/09/2005 16:09

This happened to me. My nuchal fold was 3.6. I had a risk of 1:15 for Edwards Syndrome. (You can probably find my anxious post on here somewhere.)

I now have a wonderful, healthy little boy, aged three months.

If you have any questions/worries do feel free to ask me.

CHOCOLATEPEANUT · 07/09/2005 19:32

I hesitated before posting this as I have not shared your experience. I had my first daughter aged 36 and declined all screening as I knew many people who had had worrying screening results which blighted thier pregnancies only to have children with no SN.Also and more importantly,it would not alter my decision.

I got pregnant again this year aged 37.5 and was quite upset with mat wing who tried to push me to have tests.I didnt again but sadly lost my second daughter mid pregnancy.We had to have a PM and I was angry when people said well she might have had DS and it was probably for the best.In fact she had no abnormalities, it was just one of those things.

I guess what I am trying to say (but probably failing miserably) is that the tests results are not 100% reliable and you are doing the right thing to stay positive and look forward to your beautiful baby who whether born with SN or not, is going to loving parents who will cherish and protect.


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