Nuchal Scan

[expatinscotland]

Should I not have bothered if we have no intention of having an amnio and/or terminating a pregnancy of a child with Down's Syndrome?

I thought it was for assessing risks of other conditions, too, which are incompatible with life?

Before the sonographer started, she laid into me with questions about it and would I have amnio if it came back as high risk of Down's - didn't mention Edward's or other conditions and blah blah blah.

So I just said we'd think about it if that happened, although inside I was thinking, 'If you think Down's is the worst thing that can happen, you've thankfully never been plagued by the great, big, hairy black dog that's been riding on my back for years, lady!'

I'd like to get an idea of risks, but so we can plan how to work together as a family with our new child.

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I had my free ones so that it would pick up anencephaly. I didn;t bother paying for one with ds3 (moved area - no nuchal) though (had blood tests instead that would pick up anencephaly).

I don't think you can get a risk factor as such expat. If you think about us for ds2 and ds3 we had clear tests but knew both boys were at high risk for a condition that would probably have affected them more than DS, but had not test available. We just kind of lived with that with a 'what will be will be'. Otherwise you tie yourself into knots.

The bloods is the old triple test.

Many places are now doing away with that in favour of CUBS - combined ultrasound and biochemical screening. In other words, a nuchal scan and blood screening.

I know someone who got a CVS on the NHS. And was like, 'It's clear! Thank god.' But I was under the understanding that CVS may not detect mosiac forms of some conditions, including Down's. Only amnio can do that.

Yes, nuchal is supposed to screen for spina bifida as well.

Just wondered why she focused in on Down's.

There are so many things out there with no guarantees. So many conditions, so many afflictions, there's no test for them.

What then?

What do people do if/when it hits them?

You gotta wonder, because everytime someone says, 'Why me?' I always think, 'Why not you? Or me? Or anyone else?'

Well, you know I'm not one for tying myself in knots, though, yurt.

TBH, I wonder if what really motivated me was to see if he/she were still alive at all.

I had one with dd4 (no blood test though). Originally we told the sonographer we didn't want it done,just a dating scan unless she saw something obviously wrong. As it happened she asked us if we really wanted to know (so we said ok) and it turned out the measurement was 3.1mm,putting the risk at 1:14. The possibility of a heart condition was briefly mentioned but more emphasis was put on Down's Syndrome etc. We stuck to our guns and refused anything more invasive. I am now pg again & I will choose to have the nuchal fold scan this time to get an idea of risk and I will be pushing for a fetal heart scan too.

I can understand that!

And the why not you/me etc? I always wonder what makes someone so special. Shit happens; to anyone. And if you don't get that. Well. The words Julia Hollander springs to mind.

I dropped DS1 at a [playscheme on Friday. I left him being sorted out/bossed around by a girl with DS from his school (she's lovely - a wonderful 'mother' so her siblings - and ds1). She's streets ahead of him, and always will be.

Ultimately its up to you,I think.

All I can say is that no test predicted dds delays and now,having had her and got to know her personality I would have continued even if I had known However having a sn child has large implications for the family (well,you know this anyhow IIRC ,You posted a lovely reply to a thread I started onc e about sn. and everyones circumstances are different)Although I am not religious I would have found it really hard to abort a foetus though I know everyone is different and I would not criticise someone if this was best for them.Wishing you joy and happiness with your child to come

Thanks, wrinkly. Yes, there was also no test to predict DD1's delays.

But you know what? I'd rather be her than me anyday.

People have to do what's best for them, I guess.

But for us, well, it's not for me to decide whose life is worth living.

Shit, if people did that to me my sorry, lazy ass probably would have been long gone!

Expat - I had a private nuchal with my pgs, which were (in my mind) mainly to have an early scan to check for viability of baby and anencephaly.

I think the emphasis on DS is because the test was designed to look for babies with DS (the fact that it also picks up some babies with heart problems and not DS came later).

The mosaicism thing with CVS is that the CVS is a biopsy of the placenta, so testing it tells you the chromosome complement of the placenta not of the baby. In some (rare) cases the placenta may be totally or partially chromosomally different to the baby (so placenta may have extra chromosome and baby normal or vice versa). So if the CVS chromosome result shows more than one cell line it is often recommended that the result is checked by an amnio,
The cells tested by an amnio are those shed by the fetus so are more likely to represent the true chromosome complement of the fetus.

Expat,

I really hope things go well for you.

My mum described depression as "Being trapped in a black hole with no way out"I thought that was a good analogy,along with old Churchills' black dog.Its crap,anyhow.

Keep strong,you always come across as such a strong,fiesty and together person from your posts

you are correct though expat - a raised nuchal fold can indicate a number of conditions other than down syndrome. (which is why we had a nuchal translucency screening with dd3 - chance of heart defect was our concern) We had no intention of having an amnio or cvs or terminating but felt it would be helpful to have the information we had although after dd1 we know life comes with no guarantees.

There is such an emphasis on down syndrome with regards to especially the nuchal translucency screening when as you so rightly know - it can be an indicator of other conditions. I don't know why down syndrome is the big bad thing that we need to focus so much on but hey ho that is my opinion.

I think what you said was right - you would think about it when you got the results - which really is all you can do.

hth

thanks, eids.

i just don't think amnio is for me.

i am being treated for antenatal depression already.

tbh, if it comes back as high risk that's enough for both of us. we'll just deal and try to plan for what may or may not happen.

in some ways, my black dog has been man's best friend, because it's made me more accepting about some people.

i think people are frightened about Down's the way they are frightened about death, because it's one of those things you can actually tell if it's going to be coming to you.

but they bury their heads in the sand about the myriad of other things that can go other than you planned in life - like birth trauma, illness or accident which can result in permanent disability, conditions nothing can pick up, depression or other mental illness, addiction, etc.

i was re-reading a passage in 'The Tenderness of Wolves' involving a scene in which the heroine, a resident in a mental institution, was asked to look sad for a picture. And the photographer told her to focus on feeling like she had lost her lover.

and inside she thought, 'I could have told him there were far worse things in life than an errant suitor.'

that about sums up how we feel!

I think we all go into these tests really not knowing what we might do at the next stage.

Remember life's about experiences Expat. Who's to say whether one experience is more valid than another? DS1 has opened a whole new world to us and he experiences life too. In a different way,

Too right, yurt! Thanks for that.

I didn't go into this test not knowing what I'd do at the next stage, though, Swedes.

I just basically lied to her so she'd do the test and I could see that the baby was still alive, tbh, because as I said, I don't find Down's the end of the world or the worst thing in the world.

They didn't offer just a straight up 12 week scan here, so I took what was offered.

I just wonder why she focused on that.

I mean, seriously, all I could think of is 'You think that's so bad, lady? Try drinking bottle after bottle night after night and checking out potential spots for ending your life whilst out walking around at 3AM in a big city, lady.'

ah I see what you mean- well that's what we did with the nuchal for ds1 &2. Would have gone no further, but wanted to see the little beasts and check out for anencephaly. We decided before we went in it would be no further tests.

For ds3 I heard his heartbeat around the 12 week mark, which was a suitable compromise (would have had to pay for nuchal).

x posted.

I think it's just because they can test for it. Honestly all the kiddies I have met with DS have been streets and streets ahead of DS1. ONe can get tested for, the other not. So one becomes feared, the other - well people assume it won't/can't happen to them.

I think there should be more couselling around all that tbh.

the head was fully there.

yes- they pick it up easily. And I think that is one condition where there's very little choice. So an advantage of having had the nuchal.

Now you can just look forward to meeting the little chap/chapette..... Exciting times.

i think there should be more counselling around it, too.

my HV was telling me years back the trust used to offer amnios ONLY if you agreed to abort if your child had Down's.

WTF?!

that's warped.

try watching 'the doctor who hears voices' if you think Down's is the end of the world. i'd venture to guess that woman might beg to differ.

What??? and what are they going to do if you say no/chnage your mind? It's not China ffs!