Interview AN01

Age at interview: 32

Brief Outline:

Normal first pregnancy, routine screening experiences. Had to spend time in hospital late in pregnancy for investigation of bleeding.

Background:

Children: First pregnancy, Occupation: Mother - social researcher, Father - visual effects supervisor, Marital status: Living with partner.

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

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.

Screening felt like something everybody did rather than a choice.

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.
 

They had not fully appreciated what the 20-week scan was looking for.

What about all the tests for other things such as spina bifida and so on and various blood tests that you were given? Did you feel you had enough to know what all of those were about?

Because of the little bits I'd read in the book I've got about tests and things, then I knew when she was looking at the baby's spine that's probably - well I didn't know, but I assumed that's what she was looking at in the tests. But they didn't mention that. They just say things like, "The spine looks good and strong and straight," or however it's meant to look, and they make a note of that on their funny sort of chart thing. 

And certainly the blood tests, I don't feel like I was given much information at all about. I mean, I just know they took loads the first time, and they took a very detailed family history but it wasn't entirely clear and I don't really know what they were doing, what they were testing for at that stage [the 20-week scan].

How did they describe it to you? The twenty week scan? The detailed scan? 

Yeah, it was a twenty-week or whatever scan, and I'm just trying to think whether they described it in any particular way.

They didn't call it an anomaly scan, for instance?

It says that on the bit of paper, the print-out. Yes, so you just go and have the scan, and it was only when we were walking out of the door that we looked at the - because the good thing about patient-held records is that you do, I have all these records of all my scans - and it does say, so we were reading it through and it says on the top in big letters 'anomaly scan', and you just think well, we didn't even know they were looking. 

I mean, you assume they're looking for things and they were sort of checking all the bits were there. So our baby had his hand over there, so actually they couldn't look at the lips and they had to check the lips. And that's the only way, really, that - and she didn't explain why they check the lips. But we had to wait a long time with them sort of prodding at the baby to make him move.
 

When she and her husband discussed their feelings about disability after screening, they discovered they had different views.

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 would've 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 would've 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 would've guessed he would've felt, but we hadn't talked about it. So it wasn't a huge surprise and it was, but it would've 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?
 

She found one helpful book with factual information. Talking to friends can make you more anxious.

I think I did find a good book. I looked at quite a lot of books and a lot of them were all kind of lots of soft focus pictures of parenthood. And I found a nice book that just was all about answering your questions, really. And that's been really good because whenever I've felt anxious about something, you know, like when you get a pain somewhere, then I've gone and looked it up and it normally says, "You get pain," or sort of explains what it might be. 

So that's been quite good having that. I mean, obviously you get information from other people, but a lot of it I could do without really, because a lot of it seems to be focussed on the pain of childbirth, which is something you've got to go through anyway.  

And so a lot of what people want to tell you is their horror stories about giving birth, rather than about things like screening, because I think once people have got through it they don't necessarily want to talk about going and having scans and things. They might want to show you the photo but that seems to be it.

Her nuchal scan results were lower risk, but she still did not feel completely reassured.

I mean the big thing they talked about was about Down's syndrome screening and she did all the calculations of our risk to start with, my age and those kind of things, which was one in I don't know how many. It was quite high, it was sort of one in hundreds or something. 

And then she said "and after we've done this test and done these measurements we can now say it's one in many thousand…So what the test has shown us is that it is much less likely that the baby will have Down's syndrome than when you walked through the door." Which is really nice to know, but the caveat to that is, it's always this thing about risk, there are still some cases they don't pick up in that way. 

So you never go away feeling a hundred percent reassured, which is partly what you go for is to be reassured. And you get a degree of reassurance but not, never a hundred percent reassurance. And they were very keen to stress that they often missed, there were things they could miss at this stage.

Did you feel you got enough from them about how to understand the risks that they were presenting you with?

I think they did it as well as they can. I think understanding risk is really hard.

Did they try different formulations for...?

No, no. I mean her basic thing was you came through the door as a 1 in 200, say, and you're leaving 1 in 2000, which to me was quite meaningful. I mean it did mean it was less than when you got out of bed in the morning, if that makes sense, that day. But it still wasn't what I would call a hundred percent reassuring, and maybe there just isn't such a thing…..

Do you feel glad that you've had the screening tests that you've had? Has it been reassuring in the end?

I do, because they were okay. I think if they hadn't been okay I'm not sure how I would've dealt with the decisions that you have to make as a consequence, because they don't seem entirely straightforward, and they're all about more risk calculations. So I did find them reassuring, a bit nerve-racking, and they do make you worry. But because they came out okay then it didn't feel so bad.