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Antenatal Screening

Attitudes to disability and termination

Most parents we talked to hoped that screening would reassure them their baby was fine. At the same time, they knew the main purpose of antenatal screening was to discover whether the unborn baby had a condition such as Down's syndrome, spina bifida or a heart problem.

This meant most had thought about what they would do if they found out their baby did have such a condition. They wondered about their ability to support a child with disabilities or special health needs.

Attitudes were strongly affected in some cases by people's religious beliefs and their concerns about society's pressure towards 'perfection' (see also Reasons for not having some or all antenatal screening).

Several people interviewed had had previous experience or contact with people with particular disabilities, especially Down's syndrome, which had influenced their approach to screening and termination. Sometimes it made people feel more certain they would not want to continue with the pregnancy.

One woman said she would not want to see another child go through the same thing as her cousin, and knew how difficult it had been for her aunt. Another said she would be worried about the pressure it would place on the relationship with her partner.

 

Having seen her cousin's experience of Down's syndrome, she would not want to see her own child...

Having seen her cousin's experience of Down's syndrome, she would not want to see her own child...

Age at interview: 28
Sex: Female
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Could you imagine that you might have changed your mind had you had results that suggested that you might have a baby with Down's syndrome?

Well, you can never know. I suppose that even if your mind is set upon something very strongly, you never know. You can always back up or change your mind at the last minute. That's something that you can't predict. But I've had problems in my family. One of my cousins, due to exactly this happening, nuchal...

Fold?

Yes. Due to that he is handicapped. And they carried on, my aunt carried on the pregnancy and the birth and everything. But he's badly handicapped, mentally and physically. So I think - and he's very dear to me - so I think seeing him growing up at the same time as me made me think that I could never go through what he's going through as a handicapped child.

And seeing my aunt, I just could never go through as a mother. It's just a bit too much, really, especially for the kids, to just know that you will never be the same as everybody else. So that's the reason why I had made this decision and my husband was 100% clear with that. He was all right with that as well.

What sticks in my mind is the day of his 18th birthday. Everybody was making plans and telling him, 'Oh, next year you're going to pass your driving lessons and you're going to have a wonderful job, you're going to get married', and they were making all these plans. 

And, and we went away from the party and there was my Dad, my cousin and myself, and my cousin suddenly said to my Dad, 'Look' - because my Dad is his godfather - 'look how stupid they are, they believe that I'm going to do all these things, they believe that I'm going to have a car next year and pass my driving licence. They are stupid. How could they say that? I will never be able to do all these things as everybody else'.  

And then that was it and he started to go on about, you know, his plays. But his moment of lucidity was there, and that was just heartbreaking, because he knows that he will never be able to do everything as everybody else. And I thought it was just too hard for him to live all his life knowing that he can't be like everybody else.

 

From previous experience, she felt having a baby with Down's syndrome would put pressure on her...

From previous experience, she felt having a baby with Down's syndrome would put pressure on her...

Age at interview: 35
Sex: Female
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I have experience of somebody with quite severe Down's syndrome. And when I was younger I worked, or I did voluntary work in a centre for children with learning difficulties, and I think that had quite strongly coloured my opinion of how I would cope as a parent in that situation and the sort of pressures and strains it would put on my relationship with my husband. 

And for me that is more important than having a child, I think. And I suppose I didn't want to sacrifice - it may sound selfish - but I didn't want to sacrifice the rest of my life, looking after a severely disabled child. It does sound very selfish, but I think that's the way I feel.

An older mother felt strongly she would have a termination; she was worried about the longer-term consequences of having a child with disabilities, particularly when he or she became an adult. (See also Special reasons for wanting antenatal screening for the views of people with experience of disability in their immediate family).

 

She and her husband agreed they would have chosen to end the pregnancy if the baby had Down's...

She and her husband agreed they would have chosen to end the pregnancy if the baby had Down's...

Age at interview: 37
Sex: Female
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Did you feel the same regardless of what the condition would have been, or did you have in your minds there were some conditions maybe you would have gone ahead with the pregnancy?

I don't think so. I mean, what could it be? For example, Down's syndrome? No. I have seen people, I know people who had Down's children, and I think, you know, they decided to have them and it was a good thing for them, in a way, because a Down's child is not really, you know, absolutely hopeless or anything like that. 

They are actually very good company, very loving children, and basically they keep on being children all their lives, in a way, although I don't have a close experience of how to deal with them. But for me I don't think I would have, you know, wanted to do that. 

I think there are too many children around that need care and it's very hard for everybody to have a disabled child, or with a problem. I would have gone for a termination, definitely, you know. I know there are cases in which you are told that there is a problem with the child, and then they go on in the pregnancy and the child is normal. But I think I wouldn't have taken the risk, and knowing that I was fertile helped because then you could have a second chance anyway.

It's, you know, decisions you have to make in life, and each individual has their own mind and makes their own decision, so for me it was very clear. And I really am grateful that, you know, everything went fine. And I wouldn't have, it would have been quite hard, I'm sure, to have, to make a decision like that, but yes, I think we both agreed that it, we would have gone for a termination.

 

A friend who had a child with Down's syndrome worried about what would happen to the child when...

A friend who had a child with Down's syndrome worried about what would happen to the child when...

Age at interview: 37
Sex: Female
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And you said, I think you said, you'd had friends who you'd seen?

Yeah, I know of a case, back in my country, a lady who had three normal children, grown-ups almost, and then she had this latest child who was born with Down's. I think in those times there wasn't much sort of antenatal diagnosis available there. 

And she fortunately had the means and, you know, the help around to bring up the child very well. But then it was sad at the end, because when the child was about 15 or 18 years old - the girl - her mother, well, they got divorced with her father, so that was hard for the child. And then the mother got a brain tumour. So it was a very sad case, because then she was very, very, very worried about leaving her youngest child. The others were all married, grown ups, there was no problem with that. 

But to leave a child like that alone - even the father after divorcing had died - so that was going to be, I mean, to die knowing that you were leaving a, you know, very, a needy child alone, though there was some family, but still. So those are things that I wouldn't want to have to choose in my life, especially if you have children later in your life.

I was going to say, whether that had actually influenced your thinking...

Yes, because I do think about those things. Even if you have normal children and perfectly all right, if you have them later in life, you do have higher chances to die when they are still, when they still need you. So that is for me one consideration, a strong consideration to make, because I believe when you have, decide to have a child and you have one, you do have to, you know, take a lot of responsibility about that and many other issues. So yes, for me, that is very important, yeah.

Other people's previous experience of family or friends with disabilities had not made them feel they would want to end an affected pregnancy, but they still wanted to find out to prepare themselves. Those without previous contact with people with disabilities had a range of different views.

 

She would want to be prepared for having a baby with Down's syndrome, having seen a friend's...

She would want to be prepared for having a baby with Down's syndrome, having seen a friend's...

Age at interview: 32
Sex: Female
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I have a very close friend whose brother has Down's syndrome and when we were growing up as children he was sort of a presence in our lives, so I had some understanding of in his case, a fairly severe case of Down's syndrome. 

And also my mum had talked to me about her experience watching my friend's mother give birth to that child with Down's syndrome with no idea that that was going to be the outcome at the time, because that would have been back in the 70s. So I had that as a fairly sort of real experience.

How do you think that affected your thinking about screening?

I think it made me want to try and know as much as I could before the baby was born. I think what I had understood from my friend's life story and particularly the effect on her parents was that there was the shock of it happening with no idea and no anticipation, and having to come to terms with that at the same time as being new parents, and possibly, and not really getting any support. And so I think it was possibly that factor that was uppermost in my mind around the desire to want to inform myself about the screening options.

 

Having a great-aunt who had Down's syndrome, she would want to know in advance if her baby had...

Having a great-aunt who had Down's syndrome, she would want to know in advance if her baby had...

Age at interview: 39
Sex: Female
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I liked the reassurance that everything was okay, yeah. I mean I had a great, great aunt who had Down's syndrome, so I would, it would be really helpful to know.

Did you know her?

I met her once when I was little. She was a lovely lady. I mean, I think I only ever met her once and, you know, she was really looked after by one of her sisters, they always lived together.

So has that affected your views about Down's syndrome and whether or not you'd proceed with a pregnancy if Down's were identified?

Well, knowing that it's in my family, that I had a family member who has it, I think it's particularly important to be aware that it can happen and what would I do if I had a Down's syndrome baby.

It hasn't affected, it hasn't really swayed the decision that I feel I would stick with, which is that if I did find out that my unborn baby had a birth defect that I'd probably still go through with the pregnancy. It's a phenomenally difficult decision, and I don't envy anybody who's in that position.

It is sometimes suggested that people should only have screening if they are prepared to consider a termination, but not everyone agrees. Some people had been advised by health professionals to think about this carefully. A couple whose baby had Down's syndrome felt this had not been handled well in their case.

 

Having talked to her GP, she felt there was little point in having screening if you would not...

Having talked to her GP, she felt there was little point in having screening if you would not...

Age at interview: 35
Sex: Female
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Had you discussed together what you'd do if your risk had come out high? Had you thought about those subsequent steps?

I think the next step would have, that I would have wanted to pursue would be to have the - I don't know if I'm saying it right - the Chorionic Villus Sampling which can be done I think earlier in pregnancy than the amniocentesis, I believe. 

Obviously that's a procedure that carries, does carry a risk of miscarriage, but it can give you a definitive result, I think, as to whether or not your child has Down's syndrome. So that would have been my, that would have been my next step. 

So I suppose because I had thought about what I might do, perhaps that's why I was less bothered, maybe, when I went up for the scan. I tend to be a bit of a pessimist, so getting a result of one in eleven thousand was sort of, you know, quite amazing.

Yeah, so you'd got a pretty clear picture in your mind that you would have pursued a definite diagnosis?

Yes, I think - in fact one of the very useful things that my GP said to me at my very first appointment was, 'If you're going to go down the screening route, be clear in your mind why you're doing it, and the decisions you might make, if you get certain results.' Otherwise, arguably there's not a lot of, there's not always a lot of point in, in doing it.

 

When they went for the nuchal scan, the sonographer asked why they would want to know about...

When they went for the nuchal scan, the sonographer asked why they would want to know about...

Age at interview: 28
Sex: Female
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Mother' We were sent a couple of information sheets from the hospital about screening, the twelve week scan, and attached to that was a tick box, two tick boxes that you could say whether you wanted the twelve week scan and whether you wanted to know whether there were any abnormalities in pregnancy. 

And they explained the nuchal translucency ratios and measurements that they take and basically what they could find out from your scan and what it meant, whether it be Down's syndrome or other problems. 

So we didn't really know whether to tick the box or not, so I asked my health visitor, "Do many people find out? And what's the point in ticking the box?" Didn't ever think that anything could ever possibly happen to us, didn't really think about ticking the box, but we did.

Father' I didn't even think about anything going wrong. I just thought the scan would be a scan and that would be it.

Mother' I always considered that we wouldn't be able to have children, for no particular reason, but I never considered when we did get pregnant there'd be any problems. How na've.

So did you sit down with the list in front of you and talk about it or...?

Mother' Not really, We ended up just ticking the box because I spoke to the health visitor and she said, "Oh there's no point you might as well be prepared. You might as well find out. It doesn't do any harm." We didn't really think about it, we just ticked the box and then we went, when we went for the scan the first lady that we saw she was very much, "Well, if you wouldn't terminate, if you wouldn't terminate a pregnancy, why have you ticked the box, why do you want to know?" And she was...

Father' She was quite impolite.

Mother' She was very abrupt, very, as if she wanted to give us a counselling session. Well, we weren't there for counselling. We had ticked the box, we'd made our decision and we didn't really feel that she had the right to question us in the manner that she was doing it.

As it turned out I had to go back for another scan because I had too much wind in my tummy. So we went away for a cup of tea and came back and we actually saw another sonographer who was much more down to earth, a lot more friendly. 

So we had the scan and then we were in the room and she put our age and the measurements from the nuchal translucency into the computer and came out with our ratio. So it should have been 1 in 750, and it came down to 1 in 134. So she went through what our options were as to sort of further testing, whether we wanted an amniocentesis. We made it quite clear that we wouldn't have a termination. We hadn't really spoken to each other about it.

Father' Well it was sprung on us really, wasn't it? So we didn't know what to think.

Mother' But we seemed quite clear from the outset that we wouldn't have a termination. We hadn't discussed it between ourselves at all. It was just like, "No of course we wouldn't."

A common alternative view amongst people who wanted screening but did not want a termination was that knowing in advance meant you could prepare, emotionally and practically, for the birth of a baby with special needs. One woman was advised to think in these terms by a doctor in America. Another woman felt screening should be available, not only because preparation was useful but also because you cannot predict how you would actually feel when faced with the reality.

 

Her doctor in America advised her it was useful preparation to find out before birth if the baby...

Her doctor in America advised her it was useful preparation to find out before birth if the baby...

Age at interview: 39
Sex: Female
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Yeah, yes. I think screening's a good thing. Because the risks are still relatively slim percentage-wise, I think having that reassurance that everything is OK is, for me and my partner, for both of us I think, was particularly helpful because I'm over thirty-five. 

We cannot deny that the risks are greater, so I think having that reassurance, personally, is very helpful. And also, I mean, one of the points that the doctor made that was really, I thought very relevant and was a good reason to be screened - you know, this was a reason he used for amniocentesis - is the sooner you find out if you're going to have a baby that's got a problem, you can start getting your resources and your help and your support together now, rather than waiting until the baby's born and then having a shock.

You know, the shock -you can deal with it, in a sense, you can deal with it now. You can go through a great deal of that preparation process, the grieving process. All of that can happen earlier on rather than later. I think that's sensible.

I'm not saying that he has an agenda, he had an agenda one way or the other, but I don't think he really even mentioned the word termination if there was a problem. You know, his motivation was, we want to support you through your pregnancy and help you to gather kind of support, resources, help that you might need if there was a problem.

 

It is helpful preparation to find out in advance if the baby has problems.

It is helpful preparation to find out in advance if the baby has problems.

Age at interview: 38
Sex: Female
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For one I don't think people can ever make up their mind in the abstract, really. You have to be faced with the situation and know what the reality is. And even if you have made up your mind, still if you can eliminate the possibility that your child's got an abnormality, then I think that you should be able to do so.

So it's purpose is largely to rule out and reassure as far as you were concerned?

Yeah, I think so. But also I think that when you are pregnant, you spend so much of, a lot of your time is thinking about the future and how it's going to be and what you're going to do. And there's a lot of planning involved before they get here. 

And I think that to have the shock at the end of the pregnancy of finding out that the baby has got something wrong with them, if you're not going to have a termination, that it still gives you that time to adjust and to come to terms with this reality, rather than having to deal with it at the time that the baby's born, when probably emotionally you're less well equipped to deal with it in a way, because so much else is going on and through the birth and everything else, so - and you're getting used to looking after a tiny baby. So I think there's all kinds of benefits of finding out something like that as soon as you can.

Down's syndrome was the condition people seemed to connect to screening. A few had also thought about congenital heart problems, and neural tube problems such as spina bifida. Not surprisingly, there was little discussion of other rare conditions that can be detected by antenatal screening, such as Edwards', Patau's or Turner's syndromes.

One woman had a friend whose family was affected by sickle cell anaemia. She was waiting for blood test results for the condition.

 

She talked about the impact of sickle cell disease on her friend's family and how it would affect...

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She talked about the impact of sickle cell disease on her friend's family and how it would affect...

Age at interview: 24
Sex: Female
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Have you had friends who've had the sickle cell screening?

I've had a, she must be , I've had a, my friend who I grew up with, her big sister had sickle cell and she gets it really bad because I think on her second child they were recommending her not to go through with it because she gets so much pain.

But she did go through with it. My friend, I'm not, I know she's meant to go for screening but I'm not too sure she's gone because she's kind of frightened about finding out if she's got it or she's carrying it or not. But I know she's seen her sister go through it and it's kind of frightened her off.

Would you want to know if you were a carrier?

Yeah.

So, you'd actually quite like those blood results back?

Yeah.

What would you do, do you think, I mean if, it's hypothetical but if, if somebody had told you that you were both carriers for sickle cell, what do you think, how would it have affected your thinking about the pregnancy?

It would frighten me more, I think I'd think about it more. But as I know it's a 50'50 chance - because sometimes even though you're a carrier the child might not necessarily get that, so it's, but it would kind of maybe alter my decision as well, or maybe make it, make me take a little bit longer.

Thinking about whether you'd go ahead with the pregnancy?

Yeah.

Footnote' A separate DIPEx site on 'Screening for sickle cell and beta thalassaemia and other haemoglobin variants' is also available. 

To find out about the experiences of people who found out that their baby had a particular condition and how they made their decisions, please go to the sections - 'Having further tests and waiting for results', 'Deciding whether to have further diagnostic tests', 'Deciding to continue with the pregnancy' and 'Deciding to end the pregnancy'.

You may also be interested in our sections on 'Ending a pregnancy for fetal abnormality' and 'Screening for sickle cell and beta thalassaemia'. Here you will find more parents talking about their attitudes to disability, long  term conditions and termination.

See also 'Discussing screening choices with your partner.'

Last reviewed July 2017.

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