Interview AN22

Age at interview: 44

Brief Outline: Declined all screening except 20-week anomaly scan in two most recent pregnancies.

Background: Children' 4 (ages 20, 19, 6 and 4), Occupation' Mother - Vicar, Father - househusband/computer consultant, Marital status' Married.

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

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 decided to have no screening except the anomaly scan because she could not contemplate a termination, especially after a miscarriage.

My third pregnancy was somewhat of a surprise, in that we thought our family was complete. And I'd actually made an appointment to go and be sterilised and the week I was going to go and do my counselling appointment for that I discovered I was pregnant, which was something of a shock, and not entirely welcome. 

But very, very quickly we adjusted to that, and we were really excited. And we told the children and told the family, which was pretty daft, because it was very early days. And I told the course, because I'd just started training for ministry at that point. 

And then I lost it. I mean quite early on in the pregnancy. And I was completely devastated. I mean, it was really bizarre when I think about it, you know, because we're talking sort of about eleven weeks here. And I was just completely knocked sideways.

It was handled really well by the hospital. I mean, I do have to say that. The nurse doing the scan - I mean we knew something was wrong because there'd been a certain amount of bleeding and I'd gone in and they did a scan. And, you know, very quickly we realised that there was actually nothing left.  

Having lost that child and been so upset by it, you know, it really made us reassess where we were, and we decided actually we did want more children. So I have to say the four children we have are all planned.

So we then went ahead and I became pregnant again. But we felt very, very differently about it now, partly I think because by this stage I had got some friends who'd got, who'd either had problems, you know, significant problems in pregnancy, or we had one friend who actually had a child who'd got a disability and they'd been working with it. 

And also issues about, they'd had to sort of think about what to do and how to do it. I think probably also training for ministry I was thinking a lot more about issues, and I'd come to the conclusion, partly because of how upset I'd been about losing the baby, that I couldn't face a termination, really, whatever happened. 

And so rightly or wrongly, we decided that if we were going to have a problem we didn't want to find out beforehand, we'd face it when it came. Having said that, with both the other two children we did have the anomaly scan. And that was primarily because the advice I had from my GP - and with the next child - my GP was very supportive about this decision, very helpful and, and she was quite happy to live with it. 

And she said, she was encouraging me to have the anomaly scan, because she said if that showed up any sort of physical problems, sometimes it was helpful to know beforehand, and then either things could be done in utero or they could be done immediately at birth. And there was less trauma for the, the child. So it was that sort of thing that we were thinking about.
 

The person doing her 20-week scan said it was a waste of money if people would not consider termination.

The experience with my last child was very different with the scan, because most of the way through with the hospital appointments, and particularly with one radiologist, it was very negative. 

When I actually had the scan, she couldn't see the whole of the way, whole of the backbone and she said - I mean, just, just because of the way the baby was lying. There was no particular thing about that. But she said with anyone else she would have called them back, but she wasn't going to do that with me because I'd already, you know, I'd made a decision not to have anything, so it would be a waste of time and money, and she wasn't going to do it.  

And I was really upset. My husband was furious. And of course I spent the next few nights just imagining the worst possible scenario and what there could be, and how we were going to handle it, and all that sort of stuff. And in fact I was so upset I didn't even mention it to my midwife for some time, and when I did she absolutely hit the roof, because she said, 'Nobody should be treated like that. It doesn't matter what decision you make. If you make a decision then it's for the hospital and the staff to work within that, not to try and put their judgements onto you.' 

And she was wonderful, and I didn't, I couldn't remember who it was, but she was haring off to go and find out who was on duty at that time, send in I think an official complaint. Because she said that should never have happened. But certainly that was a very different experience to go through. 

And although, I mean, the midwife was, you know, I ought go back and have another scan, and so on. And I didn't, but it mostly it wasn't a problem, but every now and again I just sort, I would sit there and think, 'Oh, well, you know, I wonder if this one's going to be OK, and what we're going to do, how we're going to handle it.' So it gave an extra question mark over the rest of the pregnancy.
 

She feels society is too concerned with perfection. There needs to be more debate about support for people with disabilities.

I don't think I'm so much worried about the amount of information. I'm slightly worried about what I perceive in society, which is the pressure towards perfection. And that's got much more to do with - in all sorts of areas - that, you know, if we start moving towards choice in too many areas - when you start reading in the papers about designer babies and all this sort of thing. 

What does that mean about our attitude towards people who aren't perfect and how are we going to handle that? I mean I suppose as a starting point, I work on the basis on that all of us actually are disabled in one way or another. Some of us have more patience, some of us, you know - in different sorts of ways, there are none of us are actually perfect, and it's something we need to work towards, which is a sort of theological position, really. 

And so working towards physical and mental perfection in children is a sort of worrying subtext at the moment for me. But I don't know about that that's so much about information, although the difficulty is that if there is information there and you can, you can do something about it, then inevitably there is going to come up an element of choice.

So I mean I do recognise that there is a whole moral question about if you have a disabled child, should you expect the State, in the form of the NHS and the education system and so on, to actually bear the burden of that, when you didn't actually need to do that? 

And, you know, it, I can see that this is not as, this is not a straightforward personal option, because it has repercussions, not just on you and your family, but actually the whole of the wider society. And as so often, the actual science that makes the possibility has gone ahead of the real, the ethical debate.
 

It must be difficult for the person doing the scan to check something they are unsure about if the woman is watching the screen throughout.

I seem to remember thinking some time in my last two pregnancies how different it was, and how much more difficult it must be if the person, the mother is seeing the scan the whole time, for them to go back and check if there is anything they think, 'Hmm, I'm not sure about that'.  

Whereas if I - yeah, I'm sure with my first two they did do a scan, but I just, they said, it was a case of, 'We're checking this, this and this,' and, you know, they got on with it. And then, 'We'll see if we can find a picture so that you can see it,' and then they'd turn it round.  

So that was sort of a, it's a bit like when they actually let you hear the heartbeat, but you know that that's not really why they're doing it. They're not doing it so that you can hear the heartbeat, they are doing it because they're checking that everything's OK. So I think yes, it probably does make it different, but I think it must be harder for them to actually check something out if there's something they're not sure about.

Were there ever any -

Because it's more obvious.

 - any moments in either of your two latest pregnancies when they were doing the scan when you thought, 'Ooh, have they found something?' Anxious moments?

Well, I think this business when she couldn't, she couldn't trace down all the vertebrae. Because it was quite clear that she was trying to do so, or that she was trying to do something. I mean, at least, she was at least good enough to tell me what it was she couldn't do.  

Well, I was going to say how much did they talk to you in each case about...?

They talked quite a lot. Certainly with my third one, I can remember them talking through 'Now we're looking at this, now we're looking at that. We're just checking this, and you can see that the heart valves are working' and things like that. I can remember that. It was great.
 

An increased risk can be difficult to interpret, without knowing about the original baseline risk.

I think the medical side of it has got to be put to people. I mean, these days we all know it's not a case where a doctor is just allowed to sort of say, 'This is what you should do'. But I think it's partly making sure that people really do know, and understand what people are saying.  

One of the problems with the whole risk business is that sometimes, you know, the risk is increased by such and such a percentage, but what was the risk in the first place? You know, are you talking of one in twenty or one in two million? 

Because actually a 0.0 something percentage increase in two million is probably not worth worrying about, whereas it might well be if it's 1 in 20.