Interview AN13

Age at interview: 43

Brief Outline: Healthy pregnancy after 2 miscarriages; following nuchal scan results they considered amniocentesis and decided against. Baby born healthy, although mother had obstetric cholestasis in late pregnancy.

Background: Children' First baby, 7.5 months old, Occupation' Mother - charity worker, Father (age 45 at interview) - researcher for a charity, Marital status' Partnered.

The fear of losing another baby after two miscarriages affected their discussion of their Down’s syndrome screening results.

Mother' I started to fret a bit about it, because I'd felt very positive and, 'Well, yeah, cool - let's go ahead. This is, it's fine, it's reduced, I'm sure that's a positive thing.' But then I started to get doubts and not understanding what the figures meant. So I rang Antenatal Results and Choices, and they were just absolutely brilliant.

It was, she was so brilliant, the woman I spoke to. It was, because I said, I explained what had happened, and where I was at in my thinking, and we talked about it and I kind of started to say, "Well, OK, so it's quite a high risk, but we could go and have amniocentesis. And I know there's a 1 in 99 chance that I would miscarry if I have amnio, and it might tell me there's nothing wrong with the baby and I'll miscarry, and I couldn't live with it, I couldn't risk losing it.'  

And I just felt, 'Well, the nuchal fold scan says, 'Yes, there's a reduced, you know, reduced, lengthened the odds, if you like, that it was going to be okay'. And I'd rather, I then decided - and I think we both sort of felt this after talking about it  - that actually I would rather have a baby with Down's than risk losing a baby that was OK.

Father' A perfectly healthy baby, yeah.

Mother' And the chances were that my baby would be perfectly OK.

Father' And I guess also the fact that you'd miscarried twice before sort of made you feel...

Mother' Made me feel more scared about it. And I just felt, 'Well, it's going to be, whatever happens' - I think after we'd talked about it and talked about it - I just felt, 'Well, whatever happens we'll have a baby. And it might be a baby with Down's syndrome, but that's OK. They'll still be our baby, and we'll have a baby.'  

So I put all of this thinking, but I felt I was not making very rational decisions. I felt I wasn't necessarily making that decision very rationally, that I was being quite hormonal and that it was not really a, that it wasn't a very sound decision. So I rang Antenatal Results and Choices and basically just talked through all of this with the person on the phone. And she said, "Well, it sounds like you're being perfectly sensible, that's absolutely right."
 

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

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

Father' I think we just kept going up and down. I think we were sort of, we were undecided, both of us, and we're 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 we'd talk a bit more and lean the other way. I don't seem to remember particularly disagreeing. 

And also it was almost like, 'Let's put off what we would do until, you know, we'd 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 didn't 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 - what's it called?

Mother' Amniocentesis

Father' Amniocentesis, whether we wanted to go for that. And I think that's when we decided, 'Well, no.'

Mother' Yeah, I think in a way you sort of, we talked about it a lot for us, which is, we're still not very good at making decisions, so it wasn't a huge amount of discussion, was it? We'd 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.

Father' Yes. Well, I felt it was, you know, you're the - but it is, in a sense. Because I didn't want to feel, if I had said, you know, 'No, I don't want you to go ahead', I would've felt [partner] would've - I felt by making a decision, it didn't 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 I've talked to, you know, all the emotions they're going through, and it's, I just didn't 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 Down's baby?' And so I did at some point sort of think, 'Right, well, I think I could deal with it' and I did read a bit about what it would involve and so on.
 

The written information was better in her current pregnancy than her first and the midwife...

Yes, I mean I think, when I went for the scans this time, when I was pregnant this time, the information that we got sent before the scan actually was very good at telling you that. It said, you know, 'This is a serious, it's a serious medical proce-' - you know, not in those kind of words, but it was a serious medical procedure, that it wasn't there just for, there was a lot of things that could be found out and it wasn't always good news.  

And that was in the information that we were sent. And it was really good that that was included in the information. And it said things like, 'If you have other children it may be a good idea to have somebody else looking after, don't bring your children with you because it could be that you get bad news and do you want your children there?' 

And I felt that that was very positive that they dealt with it like that. I thought it was really helpful, really helpful information, very clear and actually my experience of finding I was pregnant that time and, and the first time was poles apart in terms of the kind of level of support and information I got.

So you had a session with the midwife?

So I had a session with the midwife. Now that might been because I'd had the early scan, so I knew at eight weeks that the baby was OK at that stage, but I saw the midwife immediately after I'd had that first, very early scan and she was...

Was that their, that was their invitation?

No, I made an appointment to go to the, to our GP and I saw the midwife then, and she was brilliant and just spent absolutely ages with me, going through a whole pack of information about all of the different options that, all of the different tests that would happen, what the processes were, getting information about me and medical history. 

It was much more what I thought my experience was going to be the first time. So it included information about where you could get the nuchal fold scan in that information.

She knew at once something was wrong at her first 12-week scan, when it was discovered the baby...

Mother' because she was a while, and she didn't say anything and she was looking. And then I knew that this isn't right. And then she did an internal scan and she said - she first, when she couldn't, she said, "Oh, I can't, I'm, I'm" - I can't remember how she phrased it but she didn't say in an alarmed way, "Ooh, there's a problem," but she did say, "Oh, I'm having trouble. Would it be OK for me to do an internal scan?" 

 And then she said when she did that, 'You know, I'm really sorry, but there isn't a heart beat." And also she offered me a picture anyway. So she explained when she thought, what size the fetus was and so how old it was when it had died, and offered me a photo and said, you know, she gave me a bit of information. 

And then after that I saw a GP as well, but that was obviously partly because there was going to be a procedure involved to, you know, I went into hospital the next day. But she, the GP then explained what the, and they were very, I think it was dealt with in a very sensitive way then. It was very supportive.

I think it was handled as sensitively and as kindly as it could have been, I think. It's more that before I had the scan, knowing what the chance, knowing that information about what the chance of miscarriage was. And that's a difficult, I can see how for a GP that's hard, if I go and I say, 'I've found I'm pregnant,' and to say "Well, you know, this is, you'll have a scan then but you must be aware that" - I know that's really hard and that people - when I've just said that, you know, I was feeling so elated and that it was very sort of mundane, but actually they could've explained why they were being quite mundane about it, I think and just sort of saying, I don't know, I think...

Father' Well, I felt terrible I wasn't there.

Mother' Yeah.

Father' Absolutely awful. I mean, you know, and had to hare sort of, like - I don't know, what is it? Two hundred miles down the motorway, feeling absolutely like ghastly, you know.

The information about what the 20-week scan was looking for was very thorough.

Did you feel going into the scan that you knew that they were looking for other abnormalities?

Mother' Yes. The information that we got about the twenty week scan from the hospital really explained in a lot of detail what the scan was for and what sorts of things they would be looking at. And so we were nervous, obviously, going into it because it had really set out what things could and couldn't be found as part of the scan. 

But in a way that was also really good that you had a much better idea of how long it was going to take and how carefully they would need to look. And as they were doing the scan they explained a lot about the measurements that they were taking and why they were taking those measurements.

Father' And even things like unfolding its hands, wasn't it? She said they really like to see that.

Mother' Yeah, she was waiting a long time. She said, "Oh I'm trying, I'm just staying here because I just want to see if the baby unclenches their hand, because that's good. We like to see them opening and closing their hands." And then as she was doing it the baby went like that and waved.

When staff spotted something unusual during the 20-week scan, she was very anxious and would have...

The twenty week scan, how was that?

Father' Great.

Mother' That was great, wasn't it? That was, it was fantastic. It was, and that was incredibly reassuring for us, because the there was one bit where - oh, it was awful wasn't it? There was one part where she was doing, it had all been going swimmingly and it was fantastic, and it was so reassuring to see every part of the baby, apart from being able to tell what gender it was which I'd really wanted to know and they couldn't tell me. 

But it was all going fantastically and then she sort of said, "Ooh, ooh. Ooh, I'm not sure, I think I, I just need to go and check with, I would like someone else to come and look at this." And of course then we were just in complete horrors, and I had, and another, another - I can't remember what the name of the people is who does the scans

Ultrasonographers 

Mother' Yes, the ultra?

Sonographer. Or it may have been a doctor.

Mother' No, it was another ultrasonographer came in, and I had a placental strand. So it meant that part of the placenta, there was a separate part of the placenta and it looked almost like a thick hair. It was not that, she showed me it on the screen and it was at the top of the womb, so it wasn't - she said if it had been across the cervix it would've been, they would've been more concerned about it, but because it was out of the way and it wasn't impeding the baby's movement at all they weren't concerned about it. 

But that was a horrible two minutes while she said, "Ooh". And I wish she'd said something like, "Oh, I think I can see this. I need somebody else to come and have a look. It's not a ser-, it doesn't matter." And maybe she did try to do that a little bit, but it didn't allay, we were sitting in complete terror for a minute while she went and got somebody else to come and check with her.

Father' Well, I'm not sure I would say quite that, I felt from her tone that it was fairly, she didn't seem overly concerned, to be honest, I felt.

Mother' It obviously didn't make any difference to me then, I was absolutely terrified.

Father' Yes.

Mother' For me it was still terrifying, even though [partner] felt, you felt that she was being upbeat about it and that there was something that she needed to check but it was OK. For me it needed to be super upbeat for me not to be absolutely terrified, it would've really needed to be, "This really is OK. This really is OK. There's just one thing I need to check, I'm sure I know what it is and it's absolutely fine," and it would've really had to have been. 

Because otherwise, I guess it's that whole thing about how much you take in when somebody's explaining things to you that you know nothing about, and it's like anything with any condition or to do with doctors or whatever. You realise, it's only afterwards you realise how little of the conversation you actually took in and what feeling you got from that.

After being reassured at first, they found the meaning of chance statistics from the nuchal scan in...

Mother' I think the whole, so the whole story was really with the nuchal fold scan, we decided to do it and went together. And it was, and I felt it was really positive, it, the whole experience was quite positive, that they gave a lot of information about what the test actually showed you, how it worked and gave us the results and so on. 

And basically what the, what it suggested was that the risk was reduced. And the woman who did the test was very positive about the fact that it had been reduced, but without being directional about how we should treat that as a decision. 

I think she was more, I think I was kind of saying, "Well, that's really positive isn't it? That's a really good thing?" and she said, "Well, yes, I think you could say that was a good thing, yes', you know. So she was trying to, she was being supportive but without directing us obviously.

Father'  And still reminding you were still high risk. 

Mother' And still reminding us that it still means that there's a risk and these are the options from here what you can do and signposting us to amniocentesis and explaining about how amniocentesis would work.

The discussion about risk you touched on earlier I mean how clear was it to you, all these different figures that you were being presented with, was it, did you feel that you had an adequate understanding of the risk information you were being given?

Mother' It was meaningless. It was meaningless, because you never, you don't think about, risk is meaningless. What actually would've been useful would be to, say, compare it to, 'Well, what's the risk about, of me having an accident if I get in a car? What's the risk of me, you know, being knocked over as I walk down the street?' And in that context it would've meant more because you don't deal with... 

Or me falling down the stairs in the house or, there are all kinds of things that you hear about that are risks that we live with every day, that we completely live with and ignore. And so all of a sudden you had to make a decision about something based on information that you never normally use.

Father' I suppose. Although, you know, I think, as I understand it's sort of anything above 1 in 300, you know, is considered high risk. And you know, I mean, they seem quite large odds, sort of thing. And so, you know, yeah - it's like [partner] says, you know - you don't know how that compares with anything else.  

And like I say, I don't think one goes through life thinking all the time, you know, 'What's the risk of being knocked over by a bus?' or whatever. But I guess if they had said, you know, 'Well, there's a 1 in 4 risk' you probably would think...

Mother'  Then you would, that would be meaningful. But I think it was, it came out as something like 1 in 60

Father' And there were issues about giving different risks back to us by different people, and that's what [partner] got a bit upset about, wasn't it?

Mother'  Yes that was very confusing, that was really confusing that there were all kinds of risks attributed to the same thing. 

Father'  Yes, so the midwife would

Ringing the support organisation Antenatal Results and Choices helped her think through her nuchal scan results and decide not to have further tests.

Mother' She told me a lot about what the information meant, and explained everyone of the outcomes. And that was really good, because I said, "Well, I got this score on this," and she said, "Well, that's very good, that's well within the normal parameters, so that sounds very good." And so she helped me understand the information I'd be given. 

And I guess you just don't think about, at the time you get given the information and you think you understand it, and it's not until you go away and look at it again you realise it's just a set of numbers and you don't have a clue what they mean, or what's normal and what's not, or, you know, whether that's good or whether it's not. 

So she explained all of that to me and then I said, "Well this is how I feel," and she said, "Well, yeah that sounds perfectly sensible. That's a really, you've thought it through, it's a good decision and, you know, I wish you the best of luck." 

So it was really, really helpful to just talk to somebody else who was, who knew what they were talking about and who was calm, dispassionate, but at the same time really friendly and open and helpful. And I hadn't been able to get that, because everybody else had so much invested - you know, talking to friends, they've got so much invested in the decision. We couldn't talk to anybody else who could talk to us in that informed but dispassionate sort of way, and it was brilliant. And that was the turning point really, wasn't it?

Father'  Yeah. 

Mother'  Then, you know, I rang [partner] after I'd spoken to the woman from ARC and said, "Oh, I've just spoken to, she's so, it was so fantastic, and now it's all OK, and I...". And it was just completely plain sailing, I never gave it another thought from then on.