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Antenatal Screening

Thinking about antenatal screening and what it is for

Screening in pregnancy is a way of checking whether the unborn baby (fetus) has a health condition. The screening tests offered in pregnancy are either ultrasound scans or blood tests or a combination of both.

Most will be told that the chance of their baby having a health condition is very low. Parents we spoke to found this reassuring.

Screening is often seen as routine and parents told us that they did not think about it much beforehand. Some felt it was presented to them just as something everyone did, rather than something they had to make an active choice about. One woman explained she was happy with this approach because she trusted medical advice.

 

She trusted her doctor's advice that she should have screening.

She trusted her doctor's advice that she should have screening.

Age at interview: 26
Sex: Female
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Okay, and did anybody ever say to you, 'You don't have to have any screening'? Did it feel like a choice to you that you were, you could choose to have screening or you could choose not to?

For the...

For any, I mean like all the blood tests and the scans and things?

No, no it wasn't a choice. It was, "You need to come back on such and such a day," and that was it really. And if I couldn't make it on that day, because I was too sick I'd phone and rearrange the appointment but it was never an option.

Are you happy with that looking back, or?

Yeah, yeah. Because the way I feel, it's like the doctors know more than me, so if I need to have this done then I need to have it done, sort of thing. It was just me overcoming my fear of needles and blood that was like the main problem for me.

Others felt maybe looking back more explanation and discussion would have helped. Many felt they had been given good information, and that there was a real choice to be made.

(See also 'Reasons for not having some or all screening' and 'Attitudes to disability and termination').

Most people were aware that screening was looking for conditions such as Down's syndrome or spina bifida. Many did not expect their screening results to show a high chance of this. One woman in her first pregnancy felt screening at various points had also helped divide the pregnancy into reassuring stages.

 

She was optimistic that screening would be reassuring and give helpful information.

She was optimistic that screening would be reassuring and give helpful information.

Age at interview: 32
Sex: Female
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Had you got in your mind what you might do in response to various diagnoses or problems?

I think I was very much in a mindset - and it was conscious - of feeling, you know, the chances of anything being wrong to the extent where, you know, we may consider a termination were very, very slim in my own mind. 

And I suppose that was possibly and not, you know, it's not particularly sound reasoning but just based on long sort of histories of very good health and low risk factors for, you know, on paper for, for everything, and neither of us ever having been ill really, in any meaningful way. 

And I know that that sounds ridiculous, in the sense that people who do encounter problems often say, 'I can't believe it's happening to me'. I know that, at a rational level, but emotionally inside myself I just felt that the sort of chances were very low of any problems.  

And so I wasn't avoiding the possibility, but I suppose I take the view on most things in life of, 'Let's not worry about things before they happen' really. A fairly optimistic outlook and positive thinking, and all that we could do at that point in time was decide what information we wanted, on which to make decisions.

 

She felt screening helped provide stages for getting through pregnancy.

She felt screening helped provide stages for getting through pregnancy.

Age at interview: 23
Sex: Female
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Well, I have found it, like I said very reassuring, and I think that if other women find it as reassuring as I do, then it's definitely worth doing.

For some reason I never really thought about not having the screening. I mean, I never thought about, I think because I was looking forward to having anyone pay attention to me, give me a little attention, I was really looking forward to things like the 12 week scan. And they became markers that I got to say, 'Oh, just 3 more weeks until...', you know as opposed to saying, 'Oh, just 33 more weeks until the baby comes out.' You get these shorter time frames, and so, as silly as it sounds, that's a lot about what screening did for me.

Some parents had talked about what to do if results showed their baby had a high chance of having a health condition, for example having further tests or ending the pregnancy. Some people waited until after their results to make a decision.

One woman said that screening could take you from one decision to another. People felt that they might react differently when faced with a particular result.

 

She described the screening process as a 'Pandora's box' where one decision leads to another.

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She described the screening process as a 'Pandora's box' where one decision leads to another.

Age at interview: 36
Sex: Female
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Yes, we'd had some discussion about it, and I think we were of the opinion that we'd have to take it very, very, very carefully, very cautiously. 

But I think we both were agreed of why we were entering into this screening process, because I always think of it a bit like a, it's like a Pandora's Box, or a potential Pandora's Box, that if you start some screening, there's going to be an outcome of that screening, and then you have to make a choice. 

And then you are led to another path, and then you have to make another choice, and so on and so on. And all the time the pregnancy is progressing, and the clock ticks, and the baby is growing and getting bigger. 

So in my own mind, I was very much taking it one step at a time, and I think we were very, very much agreed with that - that there was really little point in thinking, 'Well, if this happens, this is what we're going to do. If this happens, that's what we're going to do.' But what we were agreed about was that we should assess what the risk factor for this pregnancy was so that we have a starting point. Because if you don't have any information to begin with, then you're none the wiser. And we wanted that information.

Screening gives you information about the chance of the baby having a condition. Diagnostic tests can give you more definite answers. A woman talked to us about the difference between the two.

 

She felt well advised by healthcare staff about the purpose and consequences of screening.

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She felt well advised by healthcare staff about the purpose and consequences of screening.

Age at interview: 33
Sex: Female
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You don't quite understand that when you go into screening that by the time you get all the results you are probably looking at week 20 or something, and that by that time a child is kicking around inside of you.

Did anybody talk to you about that or - ?

What we were impressed with, as soon as we saw the specialist that was the first thing she said. And we were really incredibly impressed with the way that she said, you know, 'The first thing that you have to think about is why are you doing this and what are the consequences of you doing it.  

And in a sense if you don't want to terminate, there is an argument for you not doing this.' And also making it very clear that that's a very tough decision. So we were very impressed with that as a kind of approach. And it was done in a very sincere kind of, and compassionate way. But that was made very clear.

What do you think about that argument? Do you think that if you aren't clear that you'd go for a termination that you shouldn't have screening?

Well I think, I mean I think it's very difficult, because it then becomes an issue about why are you screening. And I guess there is an argument to say that you're screening because at least you then know, and then you can prepare, and you don't have the shock when the child is born. And I can see that as legitimate.

And there is also the problem that it's the case that if we take severe abnormality, you would say, 'Oh yes, well, that's a reason for termination', but what if it's only mild? And this is I guess saying that you're... one is a little bit na've when you go into it.  

Or, in a sense, because screening isn't really about diagnosis, all it is, is screening and you in a sense then are dealing with risk factors, that you then have to make a decision about those. So you're always dealing with a kind of uncertainty.

Likewise even if you have an amniocentesis, it's not necessarily going to tell you the true picture. So I think, I don't know if it's a case of you definitely want to terminate, but you have to be prepared to make some very hard decisions, and it's not an easy process.

(See also 'Discussing screening choices with your partner' and 'Attitudes to disability and termination').

There were many comments about how scans have become an important part of pregnancy. The chance to see the baby and have a photograph to show friends and family is a major reason for people deciding to have scans. For men, scans can be especially emotional and happy experiences. It makes the baby and becoming a parent seem real.

 

She and her husband enjoyed the scan, and it made the pregnancy seem real, for him especially.

She and her husband enjoyed the scan, and it made the pregnancy seem real, for him especially.

Age at interview: 23
Sex: Female
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And I thought that this woman did just a wonderful job of explaining everything and taking her time, and showing us where the nose bone was and that, making us feel a part of it. 

I mean, you're looking at something that's black, white and various shades of grey, and it's not the easiest thing to make out. And I'm not even sure that, you know, we were looking, I was probably looking at an eye when I was supposed to be looking at a nose, things like that. 

But just the feeling that we weren't just happening to be there. You know, that we were actually, she made us feel like we were a part of it and that we had some sort of say, and that we had brains. I mean, it was nice to feel like you were a part of the process.

You both liked it?

We did. We both went.

Was it a good experience in other ways as well, I mean just seeing the baby, was that?

It was amazing. I think it was more incredible for my husband than it was for me. I mean, he almost cried. He wouldn't want me saying that! But I think for him it was the first time that the pregnancy really hit home. I mean, because he wasn't the one throwing up and doing things like that, he didn't really have this feeling that we were going to have a baby, and I think seeing that first scan was really an incredible moment for both of us, but especially for him.  

Because at that point you're not showing and you don't look pregnant and you don't, I mean, and I don't think that men have the easiest time understanding the pregnancy part. I think they understand having children but I think the pregnancy part can be lost on a lot of men simply because they don't go through it. So that was really an amazing time to see the pictures and to get to take them home. We had them on our refrigerator and it was really nice.

Scans can make pregnancy seem more real for women too.  They have not usually felt the baby move before they have their scans. A woman expecting twins after fertility treatment described her feelings on seeing the two babies at a 6-week scan. She was reassured they were alive and doing well.

 

Seeing her IVF twins in an early scan was reassuring and amazing, and made pregnancy seem real.

Seeing her IVF twins in an early scan was reassuring and amazing, and made pregnancy seem real.

Age at interview: 38
Sex: Female
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Well, at that stage we didn't know whether there were one or two babies - I mean, obviously that I was pregnant - and it was very nerve-racking, really, and there was both the radiographer and also the consultant who had, or the doctor who'd implanted the embryos was present. 

And because I've never had a scan - well, I had had one scan before - but I didn't know what she was particularly looking for and they don't, they didn't explain what they were looking for, except of course that it would be, it would be something very tiny. 

So it wasn't, I didn't know what, I didn't know, I was waiting for them to tell me and the way that it happened was that the radiographer said, 'Yes, there, I can see there's one sac and there's a...', I think they could see the fetal heart of one already, and she was concentrating on that one. 

And then the doctor said to her, 'Um, yeah, and if you open your eyes you'll see the other one'. So he was kind of, I mean he was, he just said it in a sort of off-hand kind of way, but that was how we found out that there were twins. And then they showed you where the tiny things were and gave you photo, gave you a copy of the photograph from the scan.

And did it alter your feelings seeing that? Did it look like babies, could you...?

No, they don't, I mean they're absolutely, they're just shadows really, just two pockets, tiny pockets. But the amazing thing was that you could see the heart beat even at six weeks, so you could see this little flickering. And I think it does have the impact of, of making you very conscious of something that's quite difficult to sink in or to imagine it really is the case.

Because obviously there's no other physical symptoms, they're just present. And so I think it does begin a process of relating to yourself as a pregnant person much more sooner than would have happened if you don't have the scans. Because you don't, I mean, you may feel some symptoms, tiredness or beginning to feel unwell, but nothing as positive as actually seeing the tiny creatures and seeing their heartbeats. So yeah, I think it does have a sort of affect on your relat-, begins the bonding process probably.

One woman said she knew the photos aren’t the main purpose. Another said people should think carefully about why they are going.

 

She knew scans were not just for parents to see their baby, and felt doctors had a responsibility...

She knew scans were not just for parents to see their baby, and felt doctors had a responsibility...

Age at interview: 37
Sex: Female
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I think at the end it's just that, because if they don't explain you exactly what is it for, and the statistical analysis involved and the whole thing, then basically you just enjoy the picture in the screen, and you ask for your photographs, because of course you have to ask for the photo of your baby and send it to your family over there and, and that's about it. 

That's what I did - and I don't have an excuse because I am supposed to know what is it all about. But yeah, once they told me it was fine, then I just enjoyed the whole happy experience. But that is not the point of the scan. That is not the point. The point of the scan is not to know the sex of your baby. That's not the point, so, but basically that's what people go for. You know, 'I want to know if it's a girl or boy and I want to have some nice pictures of it'.

But then, it is because people have not explained exactly what the whole purpose of the scan is, yeah? So, the users, the people who receive the test, they see it in that way, while the other side, the medical side, is using it for another purpose. But then there is a bit of a, a division there. And I think it should come from the medical side, because that's where the knowledge is, to explain to the other side the whole idea of this. Because it is not done to just make people enjoy a nice picture of your baby.

 

She would encourage parents to think carefully why they are having screening and what they would...

She would encourage parents to think carefully why they are having screening and what they would...

Age at interview: 29
Sex: Female
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I mean, firstly, I would say, 'Just realise it is an anomaly scan,' because I think you can still, even though people tell you, you can still go into it thinking, 'Oh, I'll get to see my little baby and have a picture of them.'  And it could then come as a shock if somebody says, 'Oh well, actually, there's  this and this that might be wrong.' 

But more fundamentally, I would say, 'Have you thought of what, or who you're actually carrying?' It's hard, because I guess it comes down to what you believe, and if you believe that you're carrying an individual, and this is already a person with a life and a soul and - just think of, through the implications of what, what you're doing, because once you know there's an abnormality, are you prepared to terminate and just the consequences of that? And if you think, well, you wouldn't want to anyway, well, then, why have the scan?  

So I guess I would encourage people to think through fundamentally what, you know, 'Who are you carrying, basically? Is this a person, or do you just think it's a, a bunch of cells or something?' And I would think the answer's 'a person'. This is already a little person, even if they haven't said hello to you yet, effectively. 

So from my belief I'd encourage them to think that way, but you can only say so much. It's up to each one to make their own decisions. But to think it through, I think is the most important, because maybe you just do things.

It depends also on how you react to GPs, and some people can feel, 'Gosh, I don't know anything. I'd better do what everyone else does and what they say.' And just to say that, you know, 'You can stop and think it through.' I think I had it easier because with a husband with a medical background it wasn't hard to talk about - get more information and talk about the implications.

I imagine if somebody doesn't have immediate access to information like that, it might be easier just to say, 'Oh well, let's just do it,' because that's what most people do. But yeah, I'd encourage people to think about it and then make a decision.

A few people we talked to had been worried about their screening results. Some had experience of a miscarriage or knew children with particular health conditions. Others had a family history of disabilities (See also 'Special reasons for wanting screening').

 

Having a friend who had recently had problems in pregnancy made her worried about screening.

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Having a friend who had recently had problems in pregnancy made her worried about screening.

Age at interview: 32
Sex: Female
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Maybe it's just me but your instant feeling is that things might be wrong and so, and when you go to the doctors, our doctors were really good and they sort of said, "Well, pregnancy is a perfectly natural thing and with most people nothing happens out of the ordinary, and so we treat you as a person, and you don't have any contact with the doctor unless there are any problems."  

So then you get moved into the midwifery service, which was a much nicer sort of touchy feely kind of service and with really nice people who listen to you and reassure you quite a lot, I'm sure that seems the main part of what they do. 

So even though the doctor had given out what I thought were quite positive messages about the fact that pregnancy was perfectly natural and for most people was a healthy experience, I think you still do have in the back of your mind kind of concerns, and because I'd had a friend who'd had a very serious problem with her first baby very recently, I think I was much more anxious than I would have been normally and had seen the kind of initial joy turn to something much more serious. And so I think I was, I had that very fresh in my mind and so I almost didn't expect everything to be okay.

People were more aware of ultrasound scans than blood test screening which are used to test for conditions such as beta thalassaemia and sickle cell anaemia.

We spoke to some people whose results showed a high chance of their baby had a condition. This news was unexpected.

 

Deciding to have screening is a real choice, which may involve you in further decision-making.

Deciding to have screening is a real choice, which may involve you in further decision-making.

Age at interview: 44
Sex: Female
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And what would you say to other women thinking about screening?

I think probably I'd talk about the fact that they do have a choice, that it's not just a package you have to go through. But that actually whatever you choose has implications. So that if you have some of the screening, then you're going to have, or you may have decisions to make as a result.  

And if you don't have any of the screenings, you, you've got results that you're going to have to deal with. And it, it may all be fine, like it was for me, you know. You may end up with four healthy children and, and that's fantastic, but you may not. 

And really I suppose to try and find out a lot - you know, if, if a situation does arise where decisions are needed, to find out all you can about it. But it's, I think probably I'd want to push that you can choose what you do, but that there are repercussions.

 

She did not feel she had much choice about screening and would have liked more information and...

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She did not feel she had much choice about screening and would have liked more information and...

Age at interview: 24
Sex: Female
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Would you go through it all again, all the screening?

Yeah, I would, I would.

Did it ever cross your mind not to have any of it?

No, I just, to be honest, I just followed what I was told to do, to be honest. I think if I was to go through it a second time maybe I'd say I'd have more of a choice and say, 'I don't want this' or 'I don't want that'. But because it's my first time and I don't really know what I was doing, I just went for everything that I was told I had to go for.

And that's how it feels like, that you're just basically, you were told?

Yeah.

And not much choice or decision?

No.

Is that right, do you think? I mean, how should it be done? What would you say to health professionals, looking back over your experiences?

Because even though my friends had been through it and they can tell me what they had been through, everyone's different, so I would have liked maybe my doctor or my midwife to sit down and say, 'Well, you're pregnant, how do you feel about it?' and tell me what we're going to do in every stage, and explain every stage to me, so at least I know what I'm going through. 

Most of the things, I've been learning through books or like, or asking my friends questions. But at the end of the day everything's different for everybody else. But I would have really liked someone to sit down and explain a lot of things to me. 

That's why I'm glad in a sense that I've had my partner's mum, because then she can explain certain things that I was stuck with and she recommended certain things to do, for me to do as well. So I'm really glad that I had her but if, if I didn't then what do you do if you're by yourself and you haven't got nobody? You need someone like that to help you out, or just explain things.
 

 

Screening felt like something everybody did rather than a choice.

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Screening felt like something everybody did rather than a choice.

Age at interview: 32
Sex: Female
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But with the general screening, did you feel that you had already made a decision in principle that you wanted screening?

No, it felt like something that everybody did as part of the process and that - I don't think it ever felt like something that you might choose not to do. I don't think there have been many things actually that have felt like they were your choice.


Last reviewed July 2017.
Last updated July 2017.

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