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Antenatal Screening

Combined screening for Down's syndrome & other chromosomal abnormalities: nuchal translucency scan & blood test (being told something may be wrong)

Some women were told their nuchal scan results showed they had an increased chance (higher risk) of something being wrong with the baby (see also 'Deciding whether to have further diagnostic tests').

They generally felt glad the nuchal scan had given them a chance to find out early. This applied both to people who chose to end the pregnancy and to people who felt better prepared for the baby's birth.

Several of these women started to feel worried during the scan, before anyone had told them anything.

One woman felt worried when the person doing the scan (the sonographer) went quiet. Her baby was later diagnosed with Down’s syndrome.

 

She grew anxious when the sonographer became silent during the nuchal scan, and was upset that...

She grew anxious when the sonographer became silent during the nuchal scan, and was upset that...

Age at interview: 36
Sex: Female
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We arrived for the scan, and as usual the appointments were running late. So then I was focusing on the fact that I had a very full bladder, and was feeling deeply uncomfortable and wanted to hurry up and get it over and done with, so that I could go to the loo.  

The lady who was doing the scan, she wasn't a doctor so she said that she couldn't discuss the scan with us. And so she started the scan and she was very, very quiet. She didn't say anything at all until the end of the scan, and she said, 'I think there may be a problem'.  

And we of course asked her what the problem was. She said that she wasn't able to discuss that with us, because she wasn't a doctor, but she would refer us to go and see a doctor who would discuss the results of the scan with us.

Just going back a little bit to this ultrasound technician and when she said she couldn't discuss the results. She did say that before the scan that she wouldn't be able to discuss the results?

She didn't actually. She said it at the point where she went very quiet, where she stopped saying things like, 'And there's the leg, and there's the arm, and there's the head, and there's your baby's tummy'. Then she went very quiet, and it was at that point she said, 'You know I can't discuss the results of the scan with you'.

So you hadn't been kind of, because one option is that yes, staff are quiet during the scan, but if they explain beforehand that's what they are going to do then it's less anxiety creating. But that wasn't your experience?

No. We did realise that there was a problem by the fact that she suddenly became very silent.

And how did you feel about the way that she presented what she thought she'd found at the end to...?

I guess at the time I felt very numb, and almost a little bit cross with her for presenting me with a problem that she couldn't discuss, and because I didn't understand the significance of the probability that she gave me. The fact that it was 1 in 20, I guess I was in denial, and I convinced myself that there wasn't really a problem and why was this lady creating a problem for me?

I was looking at it I guess from a different perspective. And the fact that I'd gone into the scan not really understanding what they were doing, and what they were looking for, and I guess very naively - and I was focusing on the fact that this pregnancy was bound to end successfully, and in a few months' time I would be holding my baby.  

And that wasn't her focus. Her focus was that she was there, the purpose of the scan was for her to look for a problem. So she was focusing on the problem and I was focusing on the baby.
 

Having to wait to discuss the results was a common concern, as described by one father. Although their baby did not in fact have Down's syndrome, they only found out that he had a heart condition (now successfully treated) because the nuchal translucency scan results led to further investigations.

 

He felt the local hospital needed to be better prepared to discuss the results of the nuchal scan...

He felt the local hospital needed to be better prepared to discuss the results of the nuchal scan...

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Well the, that first scan where we discovered the enlarged nuchal fold was at our local hospital, and I'm not sure they were particularly, they're particularly prepared for those kind of things. And they looked at the nuchal fold, measured it and their whizzy little computer popped up with a chance of having a Down's child. 

There was sort of a 1 in whatever chance. And they put in [partner's] age and it went from - my recollection is a bit hazy now because it was a long time ago - but it went from being something like 1 in 400 to 1 in 60, in seconds, like that, because of the enlarged nuchal fold.  

And we were just at that point quite devastated by it. You know, our initial reaction was that. But, you know, I just don't think they were particularly well prepared for something like that. It was, "Ooh, we've got to send you up to London," and we were like "Okay, that's fine" We kind of got used to it having spent some time in, you know, with the other miscarriages. "Well, okay, fine, you know. Let's go and see what London has got to offer." 

So I don't think they were particularly - adept is not really necessarily the right word - I just don't think they were particularly well prepared for it and maybe they needed a bit more work on the training side of that, to tell people what it meant. I mean I don't, I just didn't feel that we would've got the answers that we wanted there, you know. 

I think we had an idea of the nuchal fold, because having been through the miscarriages and you read up about it, and when you're, when you're trying for a baby, information is power. And we had that information so we were kind of quite, "Okay, yeah, the nuchal fold is enlarged. Okay, well, let's see what, you know - let's not, you know, go off crying yet, because there's, you know, we're still very early."

So yes, I think they could've helped us a bit more and explained things a bit more, but if it was somebody who maybe hadn't been through the two miscarriages that we had it might've been a different impact on them. For us we were, 'Yeah, okay. This is another minor set back. Let's carry on, see what happens.' But I can see how someone who was going in for their first pregnancy and noticing that might feel a bit let down, a bit you know, under informed.
 

One couple were told they needed to come back after a few minutes to try the scan again because the mother had 'too much wind'. Although at the time they were not worried about this, looking back they wondered whether the first sonographer had already noticed something.

 

They were asked to have a second scan but did not feel anxious about this at the time.

They were asked to have a second scan but did not feel anxious about this at the time.

Age at interview: 28
Sex: Female
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Mother' In the very first scan, the twelve week scan, she did sort of, "Oh here are his arms, here are his legs." Yes, she did. And we were quite chatty weren't we?

Was there any point when you thought she'd suddenly gone quiet or she looked worried or?

Mother' No, I don't think so.

Father' No, I suppose the only time I thought something was strange was when, as I say, when she said "Can you go and have a cup of coffee or a cup of tea and then come back?" And it was then we saw someone else instead of the first woman. And I suppose I only thought that after, obviously, once we found out.

And so when she gave you the results it was a completely bolt out of the blue, nothing had prepared you?

We did have a few tears, and we were shown into another room, weren't we? So she could go off and make the appointments with the specialist hospital and give us some more information really.

A woman describes how it was standard practice at her local hospital to ask partners to wait outside for the first part of the scan, so she was on her own at first. She would have preferred to have his support throughout.

She explains how they gradually realised something was wrong as more scans were done and another member of staff was called.

 

She would have liked her husband to be allowed in with her throughout the nuchal scan in her...

She would have liked her husband to be allowed in with her throughout the nuchal scan in her...

Age at interview: 33
Sex: Female
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I remember thinking that she [woman performing the scan] was a bit of a moody old thing, and that I always expected people, anything to do with babies would be, 'Oh, is this your first? You know, ask any questions', being very - and I just remember she was really, really grumpy, really moody.

I remember that vividly, because as she was going through the scan and my husband came in, I saw her attitude completely change, and that's when I knew that something was wrong. Because she didn't take any notice of me. First of all, she said the baby wasn't - she was trying to get the scan, the nuchal scan. She was trying to get the measurements and the baby wasn't moving very much, so I had to go for a walk.

So me and my husband went for a walk round the hospital, came back again, went to go in again. Again, no, the baby wasn't moving, and to go for another walk. So we did that again. And all the time she was very matter-of-fact and I thought quite moody. 

When we went back again and she had done the measurements and she had got someone else in to do the measurements, her attitude completely changed. She held my hand, she looked at me, whereas before she was just chatting to the other lady in there. She talked at me, you know, looked at me and held my hand, and told me that there, it was a very high measurement, and they had done it three times and taken the average and it was still high, and that I would need to go and have a further scan.

What do you feel about the fact that they ask the husband or partner to stay outside for the first bit?

Well, I can understand it in a way, because they ask you questions, for example, if you've been pregnant before, if you've had AIDS, anything like that, and I suppose some women, you know, they may not want their partner to know. 

But I'm sure they could do that, and then let their husband or partner in the room straight off, because it's a worrying time, and they don't really talk to you. And, as I said, this woman was very matter-of-fact and talking to her friend so she wasn't really telling me what she was doing, and I'd never had it done before so I didn't know. So that makes you anxious because you don't know what they're doing and it would have been better if my husband had been in there from the very beginning, I feel.
 

Parents might be asked to sit back in the waiting room with other parents in between scans and this may feel awkward if they are worried. One woman also described her feelings in the waiting room for a repeat scan at a specialist hospital. Many felt it was important to have someone with you at all scans.

 

It was unpleasant waiting for hours for a repeat nuchal scan and being aware other people waiting...

It was unpleasant waiting for hours for a repeat nuchal scan and being aware other people waiting...

Age at interview: 36
Sex: Female
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And what was that experience like when you went to see him?

Can I remember? It was a terribly, terribly hot day and because the hospital was one of the few that specialise in fetal medicine there was an enormous queue of people that built up over the day, and I think we spent a good four or five hours waiting for that appointment in a very dark, sweaty, hot corridor.

Do you know what other people, were other people waiting for...?

There were other people waiting, and I was aware as I was walking down the corridor that doors were opening and closing, and that there were situations of distress happening. I could hear one or two women crying. And yeah, I was aware it wasn't an entirely happy place. 

But the other people who were waiting, none of us spoke to each other. We didn't discuss why we were there or our experiences at all.
 

Some people were reassured by their nuchal translucency scan results but later found the baby did have a chromosomal condition. One woman had paid to have a scan for reassurance following a miscarriage, rather than to find out about Down's syndrome. The result was low chance so she decided not to have blood tests, but after birth found her baby did have Down's syndrome.

 

She paid for a nuchal scan after a previous miscarriage. The result was reassuring.

She paid for a nuchal scan after a previous miscarriage. The result was reassuring.

Age at interview: 37
Sex: Female
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We ended up, I ended up having a 12 week scan with the nuchal fold, this time. The reason for that was because I'd had a pregnancy in between, and I'd gone for the scan the pregnancy in between and the baby had died. I hadn't been aware that the baby had died, and I'd had to go in for a D&C and stuff. And that wasn't particularly pleasant, so I was a bit anxious with my - well, it was my third pregnancy of my second child - that everything was all right. 

And so in fact I went for an 8 week scan and a 12 week scan with the nuchal fold, because I was really quite anx-, I was very anxious that the baby was all right and everything was okay. So in actual fact I didn't have, I didn't actually choose to have the nuchal fold scan. I had the nuchal fold done, because that's what you have done if you pay for a scan at 12 weeks. But what I wanted was to see the baby alive and kicking, basically.

Other women found out later in pregnancy that something was wrong. One thought that her baby's hydrocephalus was suspected at the nuchal translucency scan but she was not told until the 20-week scan.

 

She thought her baby's hydrocephalus may have been suspected at the nuchal scan in her first...

She thought her baby's hydrocephalus may have been suspected at the nuchal scan in her first...

Age at interview: 39
Sex: Female
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Yeah, when I, well, when I actually had my first baby it was at a hospital where they were actually trialling it, so I've actually had nuchal fold measurements done at twelve weeks for each, all of my pregnancies. Because of course by the time I then got to my second and third pregnancy it was then sort of becoming more routine in all of the other hospitals, so.

And so that was your first screening experience, with your first baby. Was that --

At the 12 week scan, yeah, yeah.

And how was that?

Well, I mean, we thought it was lovely, you know. We had a photo to take home, for a pound, you know, and all the standard things, although with hindsight I think they had already detected problems at that point, because she, the, you know, the woman who did the scan was very, you know, she asked us in quite a lot of detail about dates, whether I was sure on dates, whether I might have got the dates wrong. You know, so obviously even at that point the head was enlarged. But they didn't tell us that, obviously.

How do you feel about that in retrospect? That they didn't mention -

I suppose it's the best thing, really. Because I mean, all I - what would they have done? They would have said, "Oh, the head's enlarged and there may be a problem or there may not be a problem. It might be that your dates are wrong, or it might' - I mean, it wouldn't have helped anything, and it wouldn't have made the outcome any different, so from that perspective I suppose it's quite, quite good. 

Although it did - at the time I didn't feel, thinking about it, it did sort of make me feel a bit, a bit nervous, the fact that she did - it did sort of trigger something subconsciously, I suppose, that, you know it was a bit strange, that she was being so questioning in terms of dates and things like that.
 

A woman whose baby was later diagnosed with a serious chromosomal condition (Edwards' syndrome) described a generally reassuring nuchal scan, although she did find it uncomfortable having a full bladder and having the sonographer press quite hard. She later found out the person doing the scan had recorded that he could not see a stomach or kidneys, but had not told her at the time.

 

The nuchal scan reassured them, but with hindsight they felt they did not really understand the...

The nuchal scan reassured them, but with hindsight they felt they did not really understand the...

Age at interview: 38
Sex: Female
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Anyway, so the morning that we went to have the nuchal scan, I was pretty apprehensive, I think we both were nervous. But also excited, I guess, to sort of find out. 

And we didn't wait too long, and then we were called into this very dark room and met the sonographer, who was pleasant. I mean he wasn't particularly sort of good company but, you know, he was sort of very matter-of-fact, and sort of sat me down on the bed to do the scan. 

And I, again, I had no idea what to expect really and, so he lay me down and then he said, you know, there's this, that he was going to do the scan, and the reason why it was dark was so that he could see as much as he could of the baby. And the way it was set up was that I was lying sort of head looking at the screen, and then he was sitting slightly to the right of me, so that I could see the screen which was, which was amazing. 

And my husband just sat just next door to me and held my hand whilst it was all going on. And he put this freezing cold gloop on my stomach, and then started pushing really, really hard with the little instrument they use. I have no idea what it's called. 

And I was amazed at how forceful he was pushing all this stuff on. And then, ping, on the screen was this little baby, and it was just amazing. I mean to see it was just, I couldn't believe it and I couldn't believe that this little thing was in me, and I had, you know, I couldn't feel it and I had no idea, it was just incredible.  

So the two of us were sort of, 'Ah, oh my God. You know, this is just, it's just wonderful.' And he was clicking away and doing all these sort of clicks and little crosses appearing on the screen, and I was asking questions about what he was doing and, you know, how many of these he did?  

And this particular chap was, that's all he does, is nuchal fold scans, so he's, you know, probably in terms of the people in - well, especially in this area - he's the guy to go to. But that's, you know, his life. So we felt reassured that he knew what he was doing, but again I would have, having never had it before, I didn't, I wouldn't have thought to ask, 'Is this the best person to do it? Is he the best in the country? You know, is there somewhere else I could go where somebody would be more qualified or not?' 

And we were there for probably about half an hour and he, when he finished clicking away, it sort of all fed into his computer, and then he printed off a piece of paper for us that gave us our risk of Down's. Now, prior to going into that, my sort of published risk of Down's was 1 in 240, I think. And then once he'd finished it, it was 1 in 958, which he said was a very good result, and that I shouldn't be worried about it. And I asked him if we should have any other tests, and he said, 'No, no, no.  That's a great result, don't worry.'

Had you been offered amnio?

No. I'd, again, I'd been given a leaflet that mentions, 'Oh, by the way', but I mean I hadn't read them, because I didn't know what it meant. I didn't, you know, I didn't understand that screening is risk factors based on information that is not necessarily accurate. And, you know, a risk of 1 in a million is irrelevant if you're the one, so to have, at the time we thought that was fantastic, we thought 1 in 958 was great, and therefore everything was going to be fine. And I remember we left that hospital just on cloud nine.

Many experiences discussed here are common to other types of scan. (See also 'Early dating scans' and '18-20 week scans').

Last reviewed July 2017.
Last updated June 2014.

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