Interview AN31

Age at interview: 33

Brief Outline:

Problems detected in first pregnancy at nuchal scan - confirmed as Down's syndrome by CVS. Couple decided to end the pregnancy. Subsequent normal pregnancy and birth.

Background:

Children' first pregnancy ended at 13 weeks. Baby aged 6 weeks, Occupation' Mother - Housewife Father - financial analyst, Marital status' Married.

She would have liked her husband to be allowed in with her throughout the nuchal scan in her...

I remember thinking that she [woman performing the scan] was a bit of a moody old thing, and that I always expected people, anything to do with babies would be, 'Oh, is this your first? You know, ask any questions', being very - and I just remember she was really, really grumpy, really moody.

I remember that vividly, because as she was going through the scan and my husband came in, I saw her attitude completely change, and that's when I knew that something was wrong. Because she didn't take any notice of me. First of all, she said the baby wasn't - she was trying to get the scan, the nuchal scan. She was trying to get the measurements and the baby wasn't moving very much, so I had to go for a walk.

So me and my husband went for a walk round the hospital, came back again, went to go in again. Again, no, the baby wasn't moving, and to go for another walk. So we did that again. And all the time she was very matter-of-fact and I thought quite moody. 

When we went back again and she had done the measurements and she had got someone else in to do the measurements, her attitude completely changed. She held my hand, she looked at me, whereas before she was just chatting to the other lady in there. She talked at me, you know, looked at me and held my hand, and told me that there, it was a very high measurement, and they had done it three times and taken the average and it was still high, and that I would need to go and have a further scan.

What do you feel about the fact that they ask the husband or partner to stay outside for the first bit?

Well, I can understand it in a way, because they ask you questions, for example, if you've been pregnant before, if you've had AIDS, anything like that, and I suppose some women, you know, they may not want their partner to know. 

But I'm sure they could do that, and then let their husband or partner in the room straight off, because it's a worrying time, and they don't really talk to you. And, as I said, this woman was very matter-of-fact and talking to her friend so she wasn't really telling me what she was doing, and I'd never had it done before so I didn't know. So that makes you anxious because you don't know what they're doing and it would have been better if my husband had been in there from the very beginning, I feel.
 

She needed to know whether her baby had Down's syndrome, but felt a bit pressurised into having...

Obviously he went - they didn't really go through the procedure. He just told me, you know, that obviously to find out 100 per cent accurately, that's the only way they could do it, and what they did, that they took the cells and they grew it and counted the chromosomes to check if there was an extra chromosome.  

So he went through exactly what happened, but - they did say I could go, as I said, they did say I could go back - but I just felt as if they were sort of saying, you know, 'You've got to find out and that's the only way you can find out, and you need to find out now'.

I felt I needed to know, but a lot of it sort of went over my head. Because I was in, you know, it was, it's all a shock and you're not really with it, as it were, a lot of what he said I didn't take on board until afterwards. And maybe that's why I felt a bit pressurised as well, because you're there and you're not really, you're sort of scared into it in some ways.
 

CVS (Chorionic Villus Sampling) was very painful, but it helped that the professor doing it was...

It was quite traumatic because the girl that went to do it, she couldn't do it. She kept trying to do it and couldn't do it, and the professor had to come in and do it. But he was very nice, I mean he held my hand and he told me to squeeze, and he went, he stroked my hair and things like that.  

He was very, very tactile, which really, really helped. Even more so than telling me what he was doing, which he went through, and you could actually - I didn't look - but my husband could see on the screen exactly the needle going in and what it was doing. But I obviously couldn't see that, but he was very tactile and that really, really helped me, I found, very reassuring.

Did it hurt?

Yes, very much so.

Were you prepared for that?

I was prepared for it to hurt, but maybe not quite so much as it did. And also you're very emotional, and I did lie there with tears streaming down my face, I know that. Because a lot if it is very - well, you're emotional anyway because your hormones are all over the place - but because of what you're doing, and also you're thinking about the risk of miscarriage as well, which he'd explained to me. So you're thinking about that and you're thinking, you know, it's just everything all to, at once. But it did hurt, yes.
 

They were both very upset, and couldn't talk about what they would do until they had the CVS ...

I think we sort of just got on with the weekend, and I think we just didn't want to, we didn't want to talk about anything until we knew, until we knew for certain. I think we thought if we talked about it then we were saying, 'Yes, there's something wrong'. I know my husband was very upset. 

I know that I, you know, but he tried not to show it in front of me, which was, you know, which was, it was very hard for him as well. But I don't remember really going through what we were going to do or anything. I think we were just waiting to see. I know I didn't go to work, I wasn't at work obviously, and I know some people that have gone to work and I thought, 'How can they?' But people, obviously people deal with it different ways. But I couldn't have gone to work, I know that, not waiting for that result.
 

She decided not to meet another woman with a baby with Down's syndrome, because she would feel...

You mentioned a bit earlier about being offered a visit to a mother who'd already gone ahead. You didn't take that option?

No.

Do you feel happy with that now or do you wish you'd gone to see her?

No, I don't because I feel that - I don't know if she knew beforehand. They didn't say to me that she'd known beforehand the baby had Down's syndrome and she'd decided to keep the baby, or whether the baby was born with it. But I just felt that if I went that obviously she would say, 'Oh, it's hard, but it's worth it'.  

She would just, because she would, you would. If I had had my baby I would say the same, because the baby's there and you'd love that baby no matter what. So I just felt as if she would say good things about it, to be honest.

She felt the consultant was unsympathetic and wanted her to decide quickly whether to end the...

I think that we just said, 'We'll wait and see what the consultant says tomorrow'. Because at this stage I still thought that they'd be able to tell me how bad it would be. I still thought there were other - not other options - but there were other things that we could consider.  

I didn't think it was as black, you know, it was, 'Yes or no, you keep the baby or you don't'. I didn't, I really didn't think that. I thought there was other things that we'd be able to do at that stage. So we just decided to wait until we'd seen the consultant next day.

Right. And how did that meeting go with the consultant?

The consultant was not sympathetic at all. I remember crying, and he just sat there and waited till I'd finished crying. And it was actually his nurse that went and got me a tissue, and he just, he was just sitting there reading my notes until I'd finished.  

And I remember he said to me, 'Well, you're young, you can have more children'. That's what he said to me. And I just, to this day I can't believe that he said that to me.

So did you feel that he was just making the assumption that you were going to have a termination?

Yes.

Did he actually sort of say that in so many words or what, how did he?

Well, he said to me, 'Well, what are you going to do?' And I said, 'Well, I don't know, we haven't spoken about it yet. We don't know what we're going to do'. And he said, 'Well', that's when he said, 'Well, you're young and you can have more children'. As if to say, you know, 'Get on with your life and, and have another'. But he, I just, he was not sympathetic at all or empathetic at all.

What would you have liked at that point?

I think just someone to comfort me. I mean my husband was there, but someone to sort of understand. Because it was only the night before I'd been given the news, and it was very, it was very soon, and I would have just liked him to show that he was concerned and that he acknowledged that I was upset, not just to read his notes and not take any notice of me.
 

She had always thought she would end a pregnancy if something was wrong, but the decision was...

To be honest I'm a very black and white person and I had always said if anything was wrong, I wouldn't go through with it. I'd always said that, because, probably because I thought nothing would be wrong. But when there was, it was a different story. But I had always said that I don't - you know, if there was something majorly wrong that I don't think I could continue with the pregnancy.

Do you still feel like that?

No. Me and my partner had said probably if this had been the second pregnancy we may have considered, more so, keeping, carrying on with the pregnancy and seeing how it progressed.

What has made you feel differently, do you think?

Going through the experience, I would say it's not as black and white as people think. People just think that it's a one choice or another, which it is, but there's a lot of - it's not an easy decision. You can't just say, 'Yes I'm going to keep the baby' or, 'No I'm not'. It's a heartbreaking decision, and it's not - I think people do think it's an easy decision to make, or they don't, they don't think it's as hard as it is. And I didn't either, to be honest, before it happened to me.

Do you feel looking back that you would have made a different choice, knowing what you know now?

No, I don't think I would have done, although it was very hard. And I suppose in a way the worst thing is the not knowing, you know, if the pregnancy had gone full term, if the baby had survived, what was, what would have been wrong with the baby? Would it have been very severely affected or not, mentally and physically? That's the worst, is the 'if'. But I don't think that I would have, no, not this time, no.
 

The hospital had a special room for people experiencing a termination. The midwives were very...

It was very hard, and I am very grateful that the hospital had this room, as I said. It's called the Forget-Me-Not Room. And there's all plaques on the wall of people who have had babies in there and they've got plaques in the memory of their babies. 

There's people that have written their story, and so you can read their story of what happened to them. It's got a shower and so, you know, you don't have to, you've got your own midwives, you don't actually have to see anybody else because it is on the labour ward as well, it was. 

You know, it had pictures up, it had things to look at, it had microwaves so you could bring food in. And my husband and my mum came with me. And I remember thinking that I didn't want any pain relief because at the time I felt that I deserved to feel pain at that time, so I didn't want any pain relief. But it got so bad that, you know, my mum sort of said, 'You're being silly. You're going thorough it physically and mentally. You need to have some'.  

So I do remember that they gave me some morphine, and she was born at 5 in the evening. I was induced at 10, and she was born at 5. And they took her away and they just, they brought her back in a crib, in a Moses basket, as it were, and I just remember she looked absolutely tiny in it. But we were allowed to keep her as long as I wanted, I could stay with her.

Was the care during the labour sympathetic?

Yes, yeah, they were, they were very, very good, the midwives. They were very, very good, I must say. They were really nice.

So, in so far as it could be a good experience, it was as good as it could be?

Yes, I, yeah, definitely, definitely think so.

What would you say to health professionals who are looking after women going through this experience? What is it that you needed that you got in this case? What were the things were really important to you?

Comfort, empathy, understanding, telling people exactly what you're going to do. But I think really be careful about what they say, because I do, I remember the next day the bereavement midwife came to see me and she said to me, 'Do you feel better now it's all over?' Which is a stupid thing to say, really. 

So I would just say, 'Just be careful what you say'. You know, some people they, of course they, she didn't mean it horribly, but it just, it sounded so awful when she said that. So I would just say, yeah, 'Just be careful of what you say'.

What could she, how could she have phrased that differently that would have helped?

'How' - well, just, 'How are you feeling?' And, just, yeah, I think just comfort, and sympathy, you know, obviously, you know, towards you and your husband as well, or partner, whoever's there with you, to include him in the process as well, which they did. They were very good at that, I must say. They spoke to both of us. It wasn't just speaking to me, it was speaking to both of us.
 

She will never feel comfortable with the decision to end the pregnancy, but counselling has...

I don't think I'll ever feel comfortable with the decision. I know I did it, and I know I did it for my baby and not for me, and that's all that I need to know. It was very hard because being a Catholic obviously they would class it as a termination and that would be wrong in the eyes of the Church.  

I never felt, I always feel as if she's with God anyway. I don't feel as if he's turned my back, it's the Church. So that was a struggle for me, like personally, inside. And I felt, I feel guilty and I don't think that will ever go, but you just learn to live with it.  

And when I went for the 6 week check-up at the doctor's, they offered me counselling, which I think I would recommend to everybody to have counselling, and I had a very good counsellor. And she made me see that, to try and turn the guilt into regret. You know, you regret that it's happened, so you don't feel so guilty. 

And she helped me an awful lot in those early days, an awful lot. I would definitely recommend a counsellor because there are things you can talk to your husband or your parents about, but there are certain things that you can't.
 

In her next pregnancy, she thought she would want CVS (Chorionic Villus Sampling), but decided...

And how did it affect your feelings this time around as far as screening was concerned? What impact did it have on your choices?

It was strange actually because I had said - well, I fell pregnant very quickly and it wasn't actually planned - but I had said that I would have everything done, that I would have the nuchal scan - obviously I'd have that anyway - and I would have a CVS or amniocentesis. I would have that done, because I would need to know a hundred per cent. I'd also had genetic counselling at a hospital and they had said that it wasn't myself or my husband, that it was the baby that had the extra chromosome, so I knew that as well, so that was an extra bit of information. 

And I was offered that as well, the genetic counselling, so we took that up, we did that. But I went for the scan, the nuchal scan, which was obviously, absolutely terrified. And I remember you do look at people and they're all excited and that, and you just, you think, 'Oh, if', you know, you don't feel the same. You don't, I was absolutely petrified, absolutely petrified. And I asked for my husband to come in this time and they said, 'Yes' so he came in as well. 

And they, first of all she said that she wouldn't be able to do the nuchal scan because the baby was too small, and I worked myself into a state and cried and she said, 'No, okay, I'll try it'. She obviously saw that I was very distressed, so she tried and she got the measurement, and we went outside. She said, 'I'll work it out for you, but it looks good, it looks okay'. 

So we went outside and she told me that the measurement was 1 point something centimetres, and that the risk was extremely low, even taking into account that it's happened before and my age. And at that point I remember thinking, 'I don't want anything else. I don't want the CVS. I don't need it'. 

So I'd completely changed my mind, which was strange, but I was offered it, I had a consultant's appointment straight after the scan and he went through everything if I wanted to that I could have done. I could have the CVS done, I could wait till 16 weeks and have the amniocentesis. They went through everything with me.