Nuchal scan - what can I do or say?

[tillymint]

One of my closest friends had her nuchal scan yesterday. Result was 1 in 2!!!! Yes 50%. She's a year younger ythan me, I was 1 in 454 at 41 yrs.
She's going for CVS but will have to wait a week for results. I can't get it out of my min d. God only knows how she and dh feel.
Any tales of hope from such high odds - please.

Havnt really got any advice, just to say that i have had a few friends who have had various scares of this nature be it scans or blood tests etc and everyone has hugely over-reacted and worried and all has turned out ok. so i hope your friend is ok

I have a slightly different angle on this, as I made a decision not to have any testing in any of my three pregnancies because I didn't want to have to make decisions about termination.

I did have occasional wake-up-in-the-night panics that my baby might be disabled. Eventually I realised that the worst I was afraid of was that my baby might have Down's syndrome, in which case he or she would already have it, and testing wouldn't change anything.

This is a really sensitive subject on which people have such different views, so I'm only offering it very tentatively in the awareness that some people may not find it helpful -- but I found once I'd accepted a DS child as one of the possible images of 'my baby' that go through one's head in pregnancy, I stopped worrying and just thought about doing the best for my baby, whatever kind of little person it turned out to be.

I read and read and thought as much as possible about the world of scanning before I took a decision similar to frogs.

But about your friends, you can only be there while they go through in their own minds how to tackle the what ifs, but it might help them to find out exactly where and what stats the results are based on. Its surprising how much you can be frightened by numbers that are gathered and processed for loads of reasons, but that are fed back to us having a singular meaning. I certainly came to my decision to have no tests partly because I felt unable to trust the results.

Lke frogs said so well this is personal stuff, and I hope your friends find a way to deal with their worry.

tillymint, I was thinking of starting a thread on the pros and cons of screening. I had a nuchal scan a few weeks ago (1:44, high for my age) and immediately regretted it. I spent the next 2 weeks frantically scanning the web for more information. I was absolutely convinced my baby had something terribly wrong. Anyway, what I did find was that the results can be so misleading, there are many women with very high odds (1:10, 1:4 and 1:2) who have given birth to perfectly healthy babies and women with odds of 1:2000 who have had babies with DS. If your friend has internet access she may like to look at this site here . Under Prenatal health go to Prenatal testing. There is alot more discussion of results from testing / screening and I found it really encouraging.

The other things that helped me come to terms with a poor result were the testimonies written here and on other sites by parents with DS children. After reading the wonderfully positive stories I was much less scared of DS and was realised I could cope and my child could have a happy life with DS. There is more integration in schools and tons of support available. I realised it wouldnt be the ned of the world.

I am now able to keep it in perspective - there are far worse things that can happen to babies and most of them cant be screened for.

the only hindsight I can offer is that had we known the syndrome our dd would be born with, then we may well have chosen to terminate the pregnancy.
As it has turned out ( and literally I get tears to my eyes even thinking about this) she has the mildest form known, is a constant joy and as such we are not going to get tested in the next pregnancy, although my dp disagrees...
It is not Downs in our case, but I think the main issue is if you would be prepared to end the pregnancy if you found out something, if you are then testing might be worthwhile.. But knwing this much then it must be so difficult for them...

tillymint ...
My friend had a 1 in 3 chance of DS ... she chose not to have amnio or cvs as to her it didn't matter ... she was urged and urged by the m/w and consultant to have amnio and was offered counselling for a termination but she refused as she did not want a miscarriage. Late on in her pregnancy she had to have fluid removed as she had way over the amount of amniotic fluid that she should have had and only then she chose to have it tested ...
Her little boy was not Down's or any other kind of syndrome ....
The nuchal fold test shows only the Risk factor.
I think if I were in your friends shoes I would only have further tests if a) I wanted to know for certain and b) I was sure that I wanted to terminate ...
But think of this ... another friend's little girl has only just, at the age of 6, been diagnosed with a genetic syndrome ... had they had a test like amnio or cvs they would have terminated ... and now my friend can't bear to think that they would have done that ...
Just a thought ...

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My brother and sil had a CVS as a result of the nuchal scan (don't know what the actual odds were). They had a further 3 months worry, as various things were ruled out, and have had a scan recently (baby due in August) where they were told that "the risks for the baby were now the same as if the initial scan had been normal" So a whole lot of worry for nothing.

Don't know if this is helpful, all the best to you and your friend.

My wonderful daughter has down's syndrome and if i can answer any questions about DS or your friend ever needs to talk to me then just contact me through mumsnet and I'd be happy to help if I can in that respect.

I am very positive about the whole Ds thing and have a wonderful healthy, happy, funny, cheeky, beautiful DD who i wouldn't change for all the tea in China!

I know this is always a scary time for parents to be but DS really isn't anything to be scared of or really worried about. I've met loads of mothers whose children have DS these 2 and ahlf years and they are just like any other child, just a bit slower to do things. Being mum to lottie is rewarding, entertaining, challenging, and wonderful.

Anyway, you know where I am if you need me.