Interview AN14

Age at interview: 38

Brief Outline: Seven and a half months pregnant with twins conceived by IVF. Has had scans throughout pregnancy; nuchal translucency scan had to be repeated because of the babies' position.

Background: Children' pregnant with twins, Occupation' Mother - lawyer, Father - Teacher, Marital status' Living with partner.

Seeing her IVF twins in an early scan was reassuring and amazing, and made pregnancy seem real.

Well, at that stage we didn't know whether there were one or two babies - I mean, obviously that I was pregnant - and it was very nerve-racking, really, and there was both the radiographer and also the consultant who had, or the doctor who'd implanted the embryos was present. 

And because I've never had a scan - well, I had had one scan before - but I didn't know what she was particularly looking for and they don't, they didn't explain what they were looking for, except of course that it would be, it would be something very tiny. 

So it wasn't, I didn't know what, I didn't know, I was waiting for them to tell me and the way that it happened was that the radiographer said, 'Yes, there, I can see there's one sac and there's a...', I think they could see the fetal heart of one already, and she was concentrating on that one. 

And then the doctor said to her, 'Um, yeah, and if you open your eyes you'll see the other one'. So he was kind of, I mean he was, he just said it in a sort of off-hand kind of way, but that was how we found out that there were twins. And then they showed you where the tiny things were and gave you photo, gave you a copy of the photograph from the scan.

And did it alter your feelings seeing that? Did it look like babies, could you...?

No, they don't, I mean they're absolutely, they're just shadows really, just two pockets, tiny pockets. But the amazing thing was that you could see the heart beat even at six weeks, so you could see this little flickering. And I think it does have the impact of, of making you very conscious of something that's quite difficult to sink in or to imagine it really is the case.

Because obviously there's no other physical symptoms, they're just present. And so I think it does begin a process of relating to yourself as a pregnant person much more sooner than would have happened if you don't have the scans. Because you don't, I mean, you may feel some symptoms, tiredness or beginning to feel unwell, but nothing as positive as actually seeing the tiny creatures and seeing their heartbeats. So yeah, I think it does have a sort of affect on your relat-, begins the bonding process probably.

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

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.

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

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.

It was not always clear what different blood tests were for, but it matters less if the results...

The first lots of blood tests were done at the hospital where they had, where they did the most detailed examinations, and I didn't always know what, exactly what they were looking for, but I more or less had an idea. 

And at the GP, it was, the thing that didn't work there was that the hospital, I had to have them re-taken - well, two of them anyway - because they got lost. But, you know, that's one of those things. But the doctor didn't do one that she was supposed to do, and then one got lost. So I had to go and have them done again at the hospital. But, you know, it's just one of those things that happened.

And were you clear what they were testing for in those blood tests?

Those ones I was, I was clear, yeah. I can't remember what they were now. Well, I know one was because I have a thyroid deficiency - so they were checking that, and that was the one that she forgot to do, and then I think it was probably haemoglobin. So I did know what those ones were, but the original significant number of blood tests I didn't really know all of what they were.

Does that worry you that you didn't know?

Not really no. I mean it's the same kind of thing, which is that if they say to you at the end, 'They're all fine', then you, then it doesn't matter. It's only if they start to say, 'Well, actually this is a bit low', or 'That's that', and then you want to know what the significance is.

In two repeat nuchal scans, she felt the consultant was much more communicative than the first...

So when you came to what must have been your fourth scan by this point, it was all sorted out?

Yes. We, I saw the consultant and we had, it was quite a contrast actually, because first of all there was a, I don't know, I think it was a doctor, who did the scan, who had a manner of doing it which was just to sit there sort of silently looking at everything and recording all the information. And the information would be passed on to someone else who was writing it down, it was a nurse or a midwife. 

And that was very, quite anxiety-making, because we didn't know what was going on and we did ask, 'What's your measure? What does that measure?', and she'd say, 'It measures the circumference of the head', and they were looking and this and they were looking at that. But we had to ask her and, so she wasn't forthcoming at all in terms of what she thought until she got right to the end when she said, 'I think everything's fine'. But by which stage we didn't believe her because, oh, you know, she hadn't explained anything. 

And then, what happened then was the consultant came in, and he went through the whole process again but in a completely different way, which was to describe everything that he saw. And first of all, without going, he just looked at where the babies were lying, where they were and described them. 

Then every measurement he did he would say what it was and say, 'That's absolutely fine and there's nothing wrong with the baby'. And his way of dealing with the fact that one of them was curled up, the one was, he was still curled up, was I was lying on the bed and [name], my partner, was sitting on a chair. And he said, 'Well, you're lying down and he's sitting up, what's the big deal?' And basically that's what the babies were like.  

The little girl one was lying flat and she could be easily measured, and the other one was like that with his legs over his head. But he said that it was absolutely fine. So his method of explaining what was going on was really substantially better than how the first doctor had done it, and he was really excellent, because you knew exactly what he was seeing, and he was telling you whether there was anything problematic about that and saying that there wasn't. And that was excellent, he was really good.

Had they forewarned you that somebody would come in again and do the whole thing through from scratch?

No, that was really nerve-wracking in that, especially because of how she'd been, and I think I said, 'Why, are you getting the consultant? Did you have to get the consultant in?', or something like that. And she said, 'Oh no, he was going to do it anyway. He was always going to look at the results'. 

But they hadn't explained that, so he just kind of appeared from nowhere. And that, having not felt very confident about what had happened so far, that was even more alarming, that they then thought, 'Oh, she needs to get the consultant in.' But in fact he was, he was so good that very shortly after, you know, you began to feel reassured. 

And he just had a very much more open and it, just more forthcoming in terms of what was going on and what he was doing, and he had a good way of explaining what he was doing, putting you at ease. He was very good.

The midwife explaining her scan results got the graph the wrong way round, but checked it with a...

I think that there were a couple of occasions when the person didn't understand the information, in fact she got it wrong. But I have to say that - and that was a midwife - that what she did do was, she obviously wasn't confident about what she was telling me, and she went and got someone else to come along. 

Somebody more experienced. And that was a common fact, feature of the care in the hospital, that wherever anybody had any concerns they deferred to somebody with more experience. And, you know, what more can you ask for, really? If there's something that's raising a concern, they don't want to, they're not going to ignore it. 

They might have a view, and generally the view was, 'I'm sure this will be fine, but I'm just going to check'. And that has been a feature of the screening that we've had. So wherever there's ever been any question mark, they've always gone to somebody else, to back up, to get a second opinion.

Can you remember what the specifics were of what she had not understood when she was trying to explain it to you?

It was just, there's a, on the measurements of the baby, it goes from one end to the other with the average in the middle and she'd just got it the wrong way round so that above, going this way to the right was whether the baby's head was bigger than average, and she'd got it the other way round.  

Because I had one scan where one of them, I can't remember what the measurement was, but it was actually much smaller than average, and she flicked it the other way and it said it was much larger than average. I mean, and in a way that wasn't particularly a concern. It wasn't, that wasn't the problem. It was that it wasn't average, which was, you know, it was sort of at the extreme end of either way, but she had misunderstood. She got it the wrong way round.

Was it you that pointed out to her that you thought that wasn't what it was showing you or...?

Yeah, because I'd, when I'd asked before about, 'Well, how does it go? Which way does it go?' the midwife had said, 'It's from small to the large, like that', so that I knew that she'd got that wrong.

She had good information about the scan results but sometimes having more information raises more...

That was pretty good and the information that you get from the scan is very helpful, because you get a lot of information there. You have a copy of your, the print-out, because I have my medical notes that I keep with me and so you get all the results from the scan and you can look at them and afterwards you're able to ask the midwife, 'What's the significance of this? What's that? What's the other?'.

I mean, I think it does mean, to some extent, you have to recognise that the more information you've got, the more there are potential questions that you'll worry about because, for example the information is about averages and so they're measuring your babies according to some set average. And so you have to recognise that, and keep in your mind that what, this is the average and your baby will have its own peculiarities. 

But it does mean that anything that's not average or normal or kind of in the middle, makes you think, 'Well, what's wrong with this? There's something wrong with that. Is that a problem?' And they, it's easy for them to be reassuring because they say 'It's a range, and so long as your baby's within this range then, then that's fine, there's no problem about that.' But I think that it does mean that because you've got this information, you have a need to be reassured, more so than if you never knew about it before.  

You know, if you didn't know about the head, abdomen circumference and that being a significant thing, you'd never, you'd never know. You'd just go and say, 'Oh, my baby's new. What's your baby like? Is it skinny, is it fat, or whatever, you know, is it fine?' It would be a different sort of experience but, so I think it does place a burden on the medical staff to have to be able to explain the results, because if you see anything that is slightly out of the average and not straight down the middle, then you need an explanation.