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Interview AN40

Age at interview: 38
Brief Outline: Down's syndrome detected by amniocentesis in first pregnancy. Couple decided to end the pregnancy. Baby son born since.
Background: Children' First pregnancy ended at 17 weeks. 1 child aged 11 months, Occupation' Mother - Job Centre Admin Officer, Father - Job Centre Executive Officer, Marital status' Married.

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Watching a TV programme in her first pregnancy made her realise that screening could not give a...

Watching a TV programme in her first pregnancy made her realise that screening could not give a...

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Yes. It was my sister again who, I suppose at that stage I'd started discussing about, you know, or thinking about what was the blood test going to involve and, you know, her experience of it and everything. And she said, 'Well, I've got this video', that she'd taped I think off a programme that was on, about screening for Down's syndrome. And she said, 'Oh, you might as well have a look at it, you know'. 

And we sat down and we looked at it and that was the thing that decided because there was a girl on it who had had the blood test and she wasn't - they don't let you know if it's only a very low risk. They don't bother sort of letting you know, so she thought, 'Oh well, everything's okay', and carried on. And she was the one in something like twelve hundred who had a Down's baby, so she felt very let down by the system. 

And something just in my head at that point made me think, 'I've got to have the amnio.' So I didn't, and I didn't have that much faith in the blood test then, after seeing that. I mean, it's quite an oldish one, maybe sort of nineties, but even so it did make me think then. And that's what made me just decide to. I told the midwife I wanted to go straight for the amnio and they were fine about it.

Did she try and talk you through the issue of risk and what the statistics mean if you do a blood test?

Well, it's a very grey area, I think. Because they do even themselves, they admit themselves that it baffles them, because it's one in so many. And they told me it was something like because purely of my age, never mind anything else, it was one in two hundred and fifty chance, or one in three hundred, something like that - which they say is low, but to me that seems very high. 

So, you know, it is a bit baffling really. So no, to be honest it wasn't that sort of helpful because it is, it does sound too complicated, really, and it doesn't mean much to you, you know, I think, so.

 

When she went for amniocentesis, the doctor questioned whether it was necessary, but she chose to...

When she went for amniocentesis, the doctor questioned whether it was necessary, but she chose to...

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You know, I just went in. Obviously I was nervous about it, because, you know, some people say, 'Oh, it doesn't hurt.' Other people say, 'Oh, it does', and, you know. And then of course the risk of the miscarriage afterwards. I mean, once it's done it's just like a waiting game then.  

We had actually paid. You could pay privately to have a three day result, because otherwise it's sort of like two, three weeks, you know, in limbo, not knowing. So we'd arranged that. So it went quite straightforward while we were there. We went in, but the doctor who was performing it, he was sort of surprised that I was so adamant that I wanted to have it done. 

He was saying my age, given my age and, you know, other factors, he said, 'There's more risk of you having a miscarriage than there being something wrong', more or less, he said. So we had a little bit of a, you know, a discussion about it in the room, but we still had made the decision and luckily we stuck to it. 

So it wasn't very nice, I must say. It wasn't, it was quite uncomfortable, but, you know, once it was over it was okay. But it was a bit worrying, really, about the doctor - I know he was probably just trying to do his job, but I'm just glad that we stuck to our guns really.

 

The midwife came in person with her amniocentesis results. She was stunned to hear the baby had...

The midwife came in person with her amniocentesis results. She was stunned to hear the baby had...

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It was the Tuesday I had it done and on the Friday they give you the result. It was arranged for them to phone me from the hospital, or the midwife, or one of them was going to ring me and let me know the result.

But that wasn't what happened?

No. I mean, the last time I saw the midwife, she said, 'Well, you won't see me unless there's a problem'. So I was in a way like hoping, 'Well, I hope I don't see her coming out, you know, arriving outside the house.' But I rested. I did what they said, you know. I just rested for the three days.  

I had a bit of pain afterwards, but I was okay, and she did come round the next day just to check me over and things, and listen to the heartbeat. And it was the Friday morning, about ten past nine, and I saw her pulling up outside and coming up the path. But I still thought, 'Oh, she's had the result early and she's just coming to tell me personally', you know. 

And I opened the door and she just blurted in the door. She didn't say, 'Can we go in?' I think she was probably, it was not a very nice thing to have to do anyway. But she walked in and she just said, 'There's a problem'. We didn't sit down, or go in another room. I was in the porch of my house in my dressing gown and she just said, 'I'm sorry there's a problem. They've found Down's, the baby's got Down's syndrome', and I was completely, you know, shaking and just absolutely stunned, because I just couldn't believe it was happening to me.

Did she then sort of sit you down?

Well, we went through into the other room. I'm sure - I don't even think we sat down, you know. We were, I was just so shocked. I was stood by the sink. I think I was just holding on. And she more or less - I mean, it all happened so quick - but she more or less assumed that I would go ahead and terminate, even though I hadn't really discussed it with her that much before.  

And she just more or less said, 'Well, this is what will happen. You'll go to the hospital and they'll give you a tablet' and, you know - and it was that day that they were saying, you know, 'Go today'. And I phoned my husband and he came straight home from work, and we had a discussion about it there. 

I mean he did, he says now that we did sort of discuss it with the midwife a bit more about, you know, 'Well, it's up to you what you want to do, when you want to do it, or if you do.' But I, because I was in such a state, I can't really remember all that was said, really, then, to be honest, no.

 

The midwife gave them excellent information about Down's syndrome and about the process of...

The midwife gave them excellent information about Down's syndrome and about the process of...

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Because this was, as I said, about half past nine in the end, by, they told us to go to the hospital at twelve that day. So we just drove straight there. It's about twenty minutes away. And then we saw one of the specialist doctors. We saw a midwife specialist, as they call her. She was absolutely wonderful. She was a lovely woman, and so good at her job.

And she sat us down and explained about, you know, 'Do you want some literature about Down's syndrome?' And she went through everything that, as I say, the problems, that they can have. And it points out that because of our age, you know, they can live a long time now and who'd look after them when you're gone? You know, that sort of thing. And that's when she gave us the ARC leaflet which gave, you know, the booklet, and it just explained step by step what would be involved if I did go and have the termination and everything. It was very good.

So you sat down and read that before you decided?

Yes. We sat in this room and we read through these. I think they sent us down to have a cup of coffee for half an hour or something like that. But it, I know they didn't force me into doing anything that day, but I think by then I just thought, 'I've just got to, you know, we've got to do it as soon as possible, really. The longer it goes on, you know, the more chance I'm going to be feeling things.'

I suppose really maybe they should go into it in more detail, either when you have your first visit from the midwife - even though, again, they probably think it isn't particularly their job - but maybe they should have some leaflets. I mean they do give you leaflets on various things, but I don't remember there being one about that.

Are you thinking about information about Down's or information about ARC?

Yeah, well, any. Either really. But, you know, they just tell you about the blood test and what it detects, you know, what they're looking for with that, but they don't really go into any great detail. So I mean, yeah, I think maybe we should have had more time and more information, before we got to, you know - because we were sat in this room looking at these booklets, and they were sort of in the other room like waiting, 'Well, you know, are you going to take the tablet or not?' you know. And it was that quick. We should have had more time, yeah.

Yeah. It wouldn't have changed your mind - or would it?

I don't think so, in the long run. I don't think it would have. But looking back you do feel that you didn't - you feel guilty, basically, because you don't, you know, it looks like you can't - not that you can't care less, obviously, but it does look like you've sort of made that snap decision, 'Oh yes, we're going to do that', you know, and without thinking about it properly, thinking it all through, because it was in such a short space of time. 

And a lot of people have said, you know, 'It was very quick that, wasn't it?' But you see, because obviously I'd never been through this thing before, I just thought that that's how, you know, how it worked, that they do do it as soon as possible, and, you know.

So going home over the weekend and reading through in more detail might have been preferable?

It may, it might have. As I say, I don't think it would have changed our minds but it would have maybe prepared us a bit more, or made us stick to our decision maybe, you know, more. I mean, I know we did anyway, but it would have given us more, sort of thing, towards, you know, being mor
 

It was hard taking the mifepristone tablets to prepare for the termination. She kept wondering if...

It was hard taking the mifepristone tablets to prepare for the termination. She kept wondering if...

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If I can sort of compare it to, I don't know, taking a suicide pill or something like that. It was so final, really. Because it was just like, 'Right, well, here you go.' And I was just sat in this room, tablet on the table and a glass of water and I just knew that - I just couldn't do it. 

I just kept sitting there looking at it and thinking, 'Right, I'll do it now', and then, you know, something's holding you back and you're sort of like, 'What if it's wrong?' That was one of my first reactions was, 'What if they've got the result wrong? What if they've got me mixed up with somebody else?' you know. I suppose everybody goes through that, really.

Did you talk to them about that?

Yeah. And she showed me the fax and everything that had come through and, you know. But, I mean they did explain that it was the particular Down's syndrome, the trisomy-21, that can happen to anybody, that it's not anything that either or us could have done to stop, prevent it, or anything in the family or anything like that, you know. It is that particular one.

How did you manage to do it in the end?

I don't know. I don't know how I - you know, there was one little bit of me in the back thinking, 'Maybe we could cope', you know. Because you do, you clutch at straws, don't you? And think, 'Oh, maybe it wouldn't be that bad, you know.' And that we'd been told it was a boy by now, and, but I don't know. 

I wasn't thinking straight anyway, but I know there was still part of that at the last minute. I was thinking, 'Oh God, what if?' you know. But as I say I knew once I'd taken the tablet that it was too, you know, that was it. It was too late and I just had to in the end. But I don't know how long it was before I did take it.

And what was your husband saying at this point?

He's very quiet, you know. He keeps a lot to himself. He doesn't talk about things, really. Obviously he was as upset as I was inside, but he just kept reassuring me and saying, 'Look, you know, we have discussed it, haven't we?' And, you know, just pointing out the sort of things again about how difficult it would be. 

So yeah, that was - in a way, I mean I'm glad in a way, because if he'd have been there saying, 'Oh, I don't know', and, you know - I mean, it would have been impossible then to take it. So it was just as well, really, that he wasn't like that at the time.

 

The termination was more painful than she expected and it was frightening not knowing what to...

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The termination was more painful than she expected and it was frightening not knowing what to...

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I suppose you did think, 'Oh, the labour won't be as bad', but it was. I mean, it was really bad pain and, as I say, they just kept topping me up with the pain relief.

And how long did it take altogether?

I suppose it wasn't that long in the end. It was six o'clock in the evening. It's just, I was so frightened because I didn't know what to expect. You know, like probably anybody who's having a baby for the first time, they don't know what to expect. And the midwives, the nurses just leave you to it in the room, and it's sort of, 'Well, if anything happens call me'.

 

She decided not to look at the baby, but sometimes wonders if it would have helped. She has kept...

She decided not to look at the baby, but sometimes wonders if it would have helped. She has kept...

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Well, the ARC leaflet explained about, you know, what would happen, that they offer you to hold the baby, to see it. They'd take photos. But I couldn't bring myself to see it, because by then, as I said, I'd sort of cut myself off thinking it was a baby, really. 

That was the only way I could cope with it, and my husband didn't want to see him. So they took him away, took some photos in a little Moses basket and everything, and they did say, you know, 'He's downstairs, if you want to see him at anytime'. So yeah, the ARC leaflet explained exactly that. So it did happen how they said, and it depended, if I'd stay in or whatever overnight, depending how I was, but because it was six o'clock in the evening I stayed in till the next day.

Did you look at the photographs or keep them?

The next morning this midwife specialist came in. I'd been alright until then, and then I just, it had just hit me I think, what had happened, really. And I was just upset, just as she came in, you know. And she got the photos and she said, 'Well, it's up to you. It just looks like a little, a normal baby. It's just small'. So I had a look at them but my husband wouldn't look at them, and he's never seen them.

You kept them?

Yes. I look at them every so often.

Looking back, do you think you would have liked to look at the baby?

At the time I thought, 'No, I've done the right thing', you know, but yeah, I think, sometimes I do think, 'Yes, I wish I had seen him.'

Did, when the midwife specialist came to see you in the morning, was it still an option? Did she discuss that with you?

Yeah, I think so, she did. I mean, you know, they were very good like that, offering you, you know, if you wanted to. And I knew the option was there, but I suppose I was just scared and guilty, and everything else. And as I said, I'd tried to blank it out saying that it wasn't a baby, you know. 

I didn't name him, because I thought that would have been more, you know, that he would have been actually there. So I did blank it out, so that's probably another reason that I didn't really want to go and see him, at the time.

What would you say to other women who are thinking about that, from your experience, whether or not to see the baby?

I mean, I know it does, it goes with how you feel at the time obviously, you know. Everybody's different and everybody has different thoughts. But it probably would help a lot of people, I would think, if they did, you know, decide to see the baby. I think it might help you come to terms with it a bit more.  

I mean, I seemed to get over it quickly and everyone was amazed. I mean, I was off work for a few weeks but, you know, I went back and I carried on as normal and - but I think it's affected me afterwards a bit, really, even though I don't really talk about it much to people.

 

In her next pregnancy she wanted to know for certain if anything was wrong, so she had...

In her next pregnancy she wanted to know for certain if anything was wrong, so she had...

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I mean I know I'm probably a bit sort of sceptical, but because I just think now, 'Well, nothing's, I can't leave anything to chance.' Because I did nearly and it proves, you know, that it can happen. So I was just being realistic really. I just thought, 'No, I've got to have more sort of reassurance that everything's okay.' 

So I did think that I would probably want to have an amnio as well, even though not everybody does after having that result. They're quite happy with that. And maybe if I'd have had that the first time then I may have been, you know, but obviously I didn't.

So you felt that you had to pursue?

Yeah, like a double sort of reassurance, even though, you know, again I had to weigh up the pros and cons of miscarriage again, especially after having an amnio already in that year.

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