Discussing antenatal screening choices with your partner

Most parents interviewed went into the screening process hoping and expecting that it would reassure them. For the great majority of parents in this country this is indeed the outcome, although of course screening cannot detect all problems: see also Learning after birth that the baby has a condition.

Most women will be reassured by their result and even if women are told after screening they have an increased chance of finding a problem, most within this group will have a healthy baby.

The primary purpose of screening is to discover whether the unborn baby has a condition such as Down’s syndrome, spina bifida or a heart problem.

Most parents talked about what they would do if they found out that their baby did have a condition. For some this had been an easy process, and they had quickly reached agreement. Others found it harder to broach the subject and sometimes uncovered differences in their thinking.

Some had thought through different options in some detail, including whether or not they would react differently to different conditions. One woman described how her and her husband’s attitudes differed on physical disabilities and learning disabilities. Another couple found they had different attitudes, but they had only discussed their views after getting the screening results.

She and her husband had different views about how they would cope with a child with physical or…

Age at interview 29

Gender Female

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The things we discussed were spina bifida and Downs, and I think from my point of view I feel like my tolerance of having a disabled child is probably higher than average. You know, I think I would have to be convinced that a child was going to have a pretty ghastly quality of life to have a termination.

Were there any influences, do you think there were any influences on your particularly, like have you had friends with babies with particular conditions or…?

I havent, when I was younger I did nursing work with sort of teenagers with very profound learning difficulties and epilepsy and cerebral palsy, and maybe that has had an influence in the sense that I felt that a lot of those teenagers did have a quality of life.

And certainly Ive done, I mean, Ive run camping holidays for children with severe learning difficulties, including children with Downs syndrome, and in fact, you know, so I think Ive been in touch with, you know, with children with disabilities.

I know my husband feels probably irrationally different about the possibility of quite severe learning difficulties from quite physical disability, and if anything is less keen on the idea of, you know, choosing to have a child with a very severe physical disability because I think he, for himself he values the ability to do what he wants physically extremely highly, and he cant really imagine that not being a huge issue for an idividual.

Whereas I can easily imagine it not being a huge, especially if youve never had it. Whereas for him if, say, someone said to him "Look, quite frankly I can say to you this child will never walk," that for him would raise a serious question. Whereas for me it wouldnt raise the same serious question.

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When she and her husband discussed their feelings about disability after screening, they…

Age at interview 32

Gender Female

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We didn’t actually talk about it till afterwards what we would have done and then it was quite strange. It was easier to talk about afterwards because it was less of a risk, I suppose. But it was quite hard. I think we had different opinions on what we would have done, and so it felt like quite a relief.

I mean I’d done quite a lot of work when I was a student with little children who had Down’s syndrome who all seemed really nice, jolly, happy children who seemed to have really quite a nice, if shorter, life. And so I’d had a very positive experience with Down’s, and I have a friend who has a sister who has Down’s syndrome.

So I think my feelings about it wouldve been very complicated and difficult to negotiate around, and I think probably my partner’s feelings were more about how difficult it would be to look after a child with special needs, which I can completely understand. And so I think that wouldve been quite hard.

Was it a surprise to you that you felt differently about it when you discussed it in retrospect?

No, I suppose that’s how I wouldve guessed he wouldve felt, but we hadn’t talked about it. So it wasn’t a huge surprise and it was, but it wouldve been very hard to discuss as a real issue, I think, because of all, if it had been really about having to make a real decision about what to do, rather than talking about what we might have done. Because that is always different, isn’t it?

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Not everyone felt the need for a lot of discussion, although one woman thought she and her partner’s views might change another time now that they already have a baby. Another mother and her husband had found it difficult to start the discussion, but then agreed quickly. Some people mentioned that they did not want to influence their partner’s thinking.

She and her partner agreed quickly about screening but their views might change now they already…

Age at interview 26

Gender Female

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And did you have any discussions with him about whether or not you’d consider termination for Down’s syndrome?

Yeah.

And his view? He wouldn’t either?

No.

Did you find you agreed quickly about it or…?

Yeah, yeah. There wasn’t very much to discuss, really. I kind of remember just putting it to him, and him saying no and I felt like that anyway, so there wasn’t really much to discuss, but yeah.

And do you think his feelings wouldve changed now that you’ve got one, about whether or not…?

About having another one? Yes.

How do you think hed think about it now?

I wouldn’t say he would opt directly for an abortion, I wouldn’t say that. But I think he would think hardly on that side, simply because [son] is such a handful. If he wasn’t, then maybe it would go another way, but I think as the situation is right now, yeah, it would sway our decision.

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She and her partner agreed quickly what they’d do with screening results, but it was difficult to…

Age at interview 28

Gender Female

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So I felt I had enough information and before the test, I mean we had made our decision that if there was a chance for the nuchal test to be positive, that, you know, what we would do. We would go forward and have another test done, and then we would make a decision. But yeah, we had it clear before the test what to do and how to proceed.

So you would have gone for an amniocentesis?

Yes.

And you said that then you would have – had you gone for the amniocentesis – then you would have decided what to do after that? So you hadn’t got that far in your decision making?

Yes, we had. Well, we talked about it, and we knew that if we had to go through the amniocentesis and the result was positive then again we knew that we would make a stop and abort the pregnancy. We had decided that well before having the nuchal scan.

And you both agreed completely?

Yes, totally. It was rather, not embarassing, but weird, because we were both scared and embarrassed to talk about it. And then one day we just decided to talk about it, we nearly spoke at the same time, saying the same thing. So it was a bit of a relief for both of us to actually have the same belief and think the same thing at the same time. So that’s why we thought OK, we don’t speak about it again until after the tests.

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She did not want to influence her husbands views about screening, but they found they agreed.

Age at interview 35

Gender Female

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During that period were you discussing together what kind of screening you would like to have?

I’m trying to think back now. I think we talked about it even before I got pregnant, and I think I had quite fixed ideas in my mind, but I was very aware that I didn’t want to influence my husband, so I asked him sort of pretty much straight out what he would do, and it turned out that we were of a similar opinion, which I think was reassuring, because after that it seemed quite sort of easy to make the subsequent decisions.

And what were your feelings at that point about what you’d do?

What wed do?

With screening results.

With screening? I think we would have seriously considered a termination if there had been something that we were concerned about.

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They discussed at length what they would do with screening results, but he felt he should support…

Age at interview 43

Gender Female

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The discussions that you had about what yod do with the results – did you find that you agreed with each other pretty quickly? How did it go, this discussion?

FatheI think we just kept going up and down. I think we were sort of, we were undecided, both of us, and wre both hopeless generally about making decisions anyway! So we just kept going backwards and forwards anyway, and sort of, you know, we would talk about it and decide, you know, think, lean one way and then wd talk a bit more and lean the other way. I dot seem to remember particularly disagreeing.

And also it was almost like,Les put off what we would do until, you know, wd gone for this and so on, and then that might help us a bit more And in some ways the nuchal scan just sort of, it was sort of – well, I know you said you didt want to at this stage – but it was sort of reassuring.

But it still actually, there were still obviously doubts. All it tells you is that the risk factor decreased a bit but [partner] was still high risk. So, you know, all we could go by then was that it was going in a positive direction. And then we had to have a, you know, discussion about the – whas it called?

MotheAmniocentesis

FatheAmniocentesis, whether we wanted to go for that. And I think thas when we decided,Well, no

MotheYeah, I think in a way you sort of, we talked about it a lot for us, which is, wre still not very good at making decisions, so it wast a huge amount of discussion, was it? Wd sort of touch on it a bit and then verge off it again. But you were sort of deferring the decision to me quite a lot really, I think.

FatheYes. Well, I felt it was, you know, yore the – but it is, in a sense. Because I didt want to feel, if I had said, you know,No, I dot want you to go ahea, I woulve felt [partner] woulve – I felt by making a decision, it didt feel I had the right to make a decision, in a way. I felt it’s, you know, it’s really, it’s for [partner] to decide.

Because I just felt, you know, from a lot of other women ve talked to, you know, all the emotions there going through, and it’s, I just didt want to be sort of directional, I suppose. And I just felt that, you know, I would support [partner] whichever way she decided, you know. I think in my own mind what I ended up doing was thinking,Right. Can I, how will I deal with a Dows baby And so I did at some point sort of think,Right, well, I think I could deal with i and I did read a bit about what it would involve and so on.

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Many people commented that even if you had discussed in principle what you would do, you could not predict how you might react in reality if you were told your baby had a particular condition. One woman who was certain she and her partner would not have considered a termination might still have considered having an amniocentesis if her scan results had left her feeling very anxious and uncertain.

She might have considered amniocentesis if her scan results had shown she had an increased chance…

Age at interview 23

Gender Female

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I guess it’s difficult to say, do you think if you’d been given a higher risk that you might have reconsidered the amniocentesis decision?

Well, I thought about that a lot. I think that with something like amniocentesis, a lot of the times it’s just a reassurance, I mean it’s, because the odds are in everyones favour, even older women’s favour, of not having a baby with Down’s Syndrome and things like that.

I think a lot of the time, having something like amnio is actually just reassuring because you get the results back and you go, Okay it’s not a possibility I mean theres, I think that tests can bring bad news but they can also bring a lot of good news and relief.

So if I had been, I think what we would have done is, if we had had high chances of having a child that could have had something like Down’s Syndrome, then I would have seen how I was dealing with it emotionally. And if it was just driving me crazy, if I was worrying too much and if it was the only thing that I could think about, then we would have considered something like that, I suppose, just for reassurance more than, or just to know. I mean, I think it can be nice to not have a bunch of question marks because there are so many question marks that come up with pregnancy.

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Some people had decided they could not make any decisions in principle unless and until they found out something was wrong. They had therefore decided to postpone any more detailed discussion or thinking until they had further information to discuss. Sometimes this was partly because women and their partners discovered they had rather different views to each other on what they would do.

They postponed discussion of what they might do about their screening results until they had…

Age at interview 38

Gender Female

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We never really did come to any conclusion or have any serious discussion about what we would do, if it turned out that one of, the one or both of them were Down’s syndrome. And we just took the approach which was, Let’s wait and see what the results are

Did you have some idea of what you would have thought about it had you got to the point of having to discuss it, or were you also just not thinking about it, not considering it at that stage?

No, I mean I did consider it. I think that I couldn’t come to a conclusion really, I mean, I think that my first instinct was probably to think to myself that I wouldn’t, I would have a termination. But then I couldn’t quite imagine that either, and because it’s so abstract it seemed the sensible thing, not to go through the torturing yourself about what you would or wouldn’t do until you knew what the outcome was.

Because even the thought processes that are involved in deciding whether you would want to terminate a baby because it’s got Down’s Syndrome is pretty distressing. And so I don’t know, for us it was, Well, you know, if we have to face that decision, then let’s face it when it’s a reality, and now it’s not So you won’t put yourself through the sort of distress or the anxiety of that. So that was how we approached it really.

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They did not discuss in advance what they would do with the results of screening, and were…

Age at interview 32

Gender Female

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Had you and your partner already had discussions about what screening you would like or what your attitude was to screening before that point?

Not in specific terms, in that we weren’t fully aware of the different screening options available. The obvious screening is the actual physical scan, and we knew about that, and wed talked about the fact that we wanted to have that. But we had sort of talked in general terms – just around the decision to have a child, really – in terms of, you know, why we were having a baby and what it meant I suppose to us, and the fact that we knew in making that decision that there were some things which you can’t control and that to some extent Nature takes its course.

And that I think, you know, we were very conscious that we didn’t assume we were going to get pregnant in the first place, for instance. We were sort of, we tried to manage on the basis of fairly low expectations, because I think we just, we both very much believe that it’s not a human right to have a child and that it’s a responsibility that we both took very seriously. And I suppose that sort of affects our feelings about choices that you might make along the way in terms of bringing a child into the world.

Did you actually get as far as having an explicit discussion with each other about whether or not you’d ever consider termination?

I don’t recall any explicit discussion about that, in terms of one of us saying to the other, ‘What would you want to do if we found out that the child had X?’ I don’t think we went through and sort of categorised between ourselves what would lead us to consider that and what would not be a consideration.

So the conversations we had never got that far. But I think that the fact that we were having conversations about different stages of screening and we knew that the implications of the different stages in terms of what we found out from them, there was almost an implicit sort of understanding between ourselves that that wasn’t an option and that, as we do with most things, we would take things one step at a time and make a decision on the basis of the information we had at any one stage.

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She did not want to worry about something being wrong unless it actually happened.

Age at interview 33

Gender Female

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At what point did you start having those discussions together about Down’s Syndrome?

Pretty early on. I suppose theres a kind of, theres no history in either of our families and although I probably fall into the category of an older mother now, I’m still not nearly as old as, you know, some people who are having their first baby so it’s not something, to be honest, that worries me greatly.

And maybe that’s me just being na’ve, I don’t know, but you know, I kind of, I’m going on the history of everybody. I don’t sort of feel theres any need to stress about it unduly, and well sort of deal with it when it happens, you know, if it happens..

And so you talked about whether or not you’d go for a termination. Part of that discussion must also have been, could you live with a Down’s Syndrome baby if you had one?

Yes.

And did you talk about that in much detail?

Not in a huge amount of detail. I think, you know, as I said, were kind of the opinion that we would deal with anything as it comes up. And I think you can spend too much time worrying about things going wrong. And I think particularly, you know, the profession that I’m in, you see so many horrible things that you – not you become immune to them – but I see no point in getting stressed about things until they become a reality.

And I know that the percentage chance is still very, very small that, you know, it would be an actual reality, so I’m kind of trusting with that. And we said that if the results of the AFP come back and indicate that I could be in a higher risk group, then, you know, we would deal with that situation as it came. But at no point have we said we couldn’t deal with this at all, you know, we would look at termination.

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She and her partner had different views about what they would do with the results of screening…

Age at interview 39

Gender Female

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And what discussions or what thoughts had you had personally before you got the results, and any discussions with your partner about what you might do if it had come back saying you were at higher risk?

We were, we had different opinions about it. Mine, my opinion was I really felt the baby would be fine, but if there were any problems wed kind of have to cross that bridge when we got to it, but that I was very much against the idea of termination.

I couldn’t bear the thought of not having the child, and if there was something wrong wed have to deal with it. He was of the opinion that he could not bear to have a child that had some kind of abnormality or had Down’s syndrome and although we didn’t get to the point of really discussing, ‘Well, what shall we do?’ I think he would have steered more to the direction of termination.

Luckily we didn’t really have to have that conversation, because the turnaround time with the testing, there was not a great deal of waiting. It was done at sixteen weeks, so I, probably within a week we had the results. So it was, it didn’t become a real point of stress for us, even though we did have slightly different opinions. I kind of, I got to see a slightly different side of how he thought and how he would not have been able to cope, but he was very honest about that and I appreciate that he could just say, ‘I wouldn’t be able to cope.

So you kind of got so far with the discussion and then put it on ice, kind of…?

We put it on ice until we had the results and then we didn’t have to continue it, luckily, yeah.

Has anything happened since that would change your view about termination? I mean now that you have the baby. Looking back would it make you feel any differently about termination or if you were pregnant again?

I think if I was pregnant again, now that I’m a mum, the degree of emotionality around the decision would be significantly more. Because I didn’t have children then, I didn’t have a baby. I didn’t know what it was like to love your child so much.

It was all an abstract concept to me, so we were just dealing with ideas. We were dealing with ‘what ifs. So if I were to have another child, you know, I’m that much older now, so I think the issue of risk would be much tougher to deal with.

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