Interview 22

Age at interview: 31

Brief Outline: Her 1st pregnancy' some bleeding and sickness, scan at 7 weeks confirmed pregnancy. 12-week scan normal. Triple test at 19 weeks, found raised AFP levels. 20-week scan identified hole in baby's heart and shortened limbs. Specialist scan found 2 holes in heart and abnormalities in limbs, bowel and brain- sent for amniocentesis. Pregnancy ended by induction at 21 weeks. She has had another baby since termination.

Background: Pregnancy ended in 2000. No. of children at time of interview' [1] + 1. Age of other child' 2. Occupations' Mother - nurse, Father' company director. Marital status' married. Ethnic background' White British.

When she was told her baby's condition (Edwards' syndrome) was 'incompatible with life' she felt...

I think it was just too much to really remember. I was just devastated, but numb I think. I just didn't really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don't think the full extent of it had hit us by then. 

We sat waiting for the consultant and she came in. And she was absolutely great. And she came in and she said, 'Hi Mum, hi Dad,' to us. And she was a really nice woman - a bit eccentric but really nice - and she said, 'Look, this baby is not very well, the abnormalities we've found with the heart and the limbs,' and she said, 'At the moment it doesn't look like. The problems the baby's got are looking like they will be incompatible with life'. That's the words that she used. 

And again that was a shock because a hole in the heart is something what you think can be operated on, and short limbs, well, maybe they would grow or they, we did, it wasn't something we were expecting, I don't think, that she just said. So from pretty much the word go we were told that the problems the baby had at 20 weeks were incompatible with life. 

Which really, from that moment on I felt I didn't have a problem with making a decision. So that wasn't part of the problem for us. It was, the decision in a way was taken away from us because we were told, 'Your baby will not live'. So we didn't have that choice of saying, 'Well, we could have a disabled baby or we could have a baby with this problem or the baby would need x amount of operations'. 

Pretty much from the word go we were told that the baby was 'incompatible with life', and it would be a case of between the 20 weeks and the full term that the baby wouldn't survive and really it just depended on the timing I think. 

Her feelings about the baby changed radically and she felt very sad whenever she felt him kicking.

And that was just, I think my whole world had fallen apart and I was being told the most horrible news I could ever have, and then it was being worsened by her saying, 'Oh, and you've got to actually give birth to this baby.' And I think at that moment I felt that I had something horrible inside me and I just felt I wanted it out. And I just wanted them to say, 'We'll take you now and we'll put you to sleep and when you wake up it will be gone'. I just felt, 'Oh, get it out of me'. And I know it sounds awful, but that's how I felt. This baby we had wasn't the baby I wanted. It was a baby which wasn't going to live, and I just felt that there was something what I didn't want inside there. 

 But luckily the, that feeling only lasted a few hours. And when I got home and then, I think they gave us a picture, no, they didn't give us a picture that time, but when I got home I sat there and I thought, 'Oh, this poor baby, it's got little, short legs and little arms and the heart's not working. And this baby's survived all this time when they said that it, really wouldn't have expected it to'. And I felt really sorry for the baby then, and I think those feelings of, 'Oh, I just want to get it out of me' I felt a lot better to think, 'Oh, that poor baby'. 

And the worst thing as well was that a few days before this had happened the baby had started kicking. And that night after we'd been for the scan the baby was kicking more and more. And I just felt, 'Oh, this poor baby' and I just felt really sad for the baby and really sorry for it that it was never going have a life. 

Describes how upset she felt as she went about her normal routines at home knowing her baby was...

On the Tuesday we went back to our own hospital, where they gave me a pessary which would soften the cervix and induce labour, but it wouldn't work for 24, 48 hours. So we had that, went to the gynae ward and had that, and then came home. And it was then a case of the Tuesday and Wednesday just going about life as normally as we could do. 

How did that feel? Was that easy to do?

Just that your whole life's falling apart but you're in Sainsbury's wandering round doing your shopping, and it's quite surreal really. But then it was afterwards as well. So it was just a case of doing what we could and telling people, because I just couldn't bear that people might ring or come to our house and, and just maybe drop themselves in it and say, 'Oh, how's things?' And so I just felt that I had to beat people to it and let everybody know. 

And the few things we had bought for the baby we were frantically packing away and putting in the loft because I couldn't bear to see them round the house. But luckily we'd only bought a handful of things, so it wasn't a massive job.  

So on the Thursday I went to the hospital in the morning, and we went on to the gynae ward, where we had a separate room. And the sister, nursing sister introduced herself to us. And straight away I said to her, 'You do know that we want this baby and we're not having a termination because we've just decided we don't want it and I...'. She said, 'Of course you know - I know exactly what's happened.' But I was worried that she might think the baby was fine and we were just coming in for a late termination because we'd decided all of a sudden we didn't want this baby. 

So straight away obviously, she knew anyway, but I just didn't want her to think badly of us. I felt, 'Well, we feel bad enough as it is without worrying that other people are judging us and thinking, 'oh... well, and they don't even want this baby.'  

Feels she was well looked after by a nurse on a gynaecology ward and was able to self-administer...

So I had another pessary, and I think this was about 10 o'clock. And they gave me a morphine pca which, I could press the button to give me morphine which would stop the pain when the labour did actually start.

So I got the feeling straight away that we were in a separate room, we were on the gynae ward, we had our own sister who was looking after us and she knew the full story of what had happened, and they'd given me this morphine pump. So I felt, 'well, they don't want me to be in pain, they're looking after me.' And I felt like I was in good hands.  

And really throughout the morning she just kept popping in and seeing if we were alright, and she was a really really lovely woman, and she spoke to my husband. And my husband had a magazine and I had a book and we just sat there and waited. And once the pain started I used the morphine. I was a bit frightened really, I didn't know how the feeling would be. And once the pain started I said to my husband, 'Do you think I should press the button?' And he said, 'Well, I don't know'. And as it started and it got worse I thought, 'Well, I don't really want to be in pain.' I was frightened of feeling pain and I didn't really want to go through the whole procedure in agony. So I used the morphine. 

And I, we explained to the sister, after reading the ARC booklet myself and my husband decided that we didn't want to see the baby because we were worried what we might see. And we both had a picture in our mind of a little baby, and we were worried that what we saw might affect what picture we had in our mind. So she said that that was fine. 

And, as the day progressed she just came in and out and I was quite sleepy with the morphine. So round about 5 o'clock things had progressed and she examined me and she said, 'Right, well I don't think it will be very long now'. And she came back in and really quite easily the baby was delivered. And she took the baby away.

Decided she wanted to see her baby after she had left hospital and felt much happier once she had...

And from there we just went home and came back to the house. I can't even remember coming home now. That was on a Friday I think we came home, the Friday morning. 

And then on the Sunday we phoned up and said, 'We want to come and see the baby because we've not seen him.' And they'd told us that it was a boy. And on the Sunday we went back in to the gynae ward. We phoned up and she went, 'Right, come in and I'll sort it out.' 

So we got there and there was a room set aside with a box of tissues there. And she'd organised for the hospital chaplain to come. And she brought the baby, and the chaplain said a few prayers for the baby and we decided on a name for him. And he was in a tiny little Moses basket. And I just felt guilty that we hadn't seen him. I thought, 'You poor thing. You, we didn't even want to see you and you're our little baby.' And I just felt this poor baby had been taken away and I just thought, 'that's just awful.' So we were glad to see him and he looked normal, he looked fine.

No, it was a different room, yeah, I don't know why. But maybe somebody was in there, somebody else. So.. we saw him and he was kind of darker coloured to what I would expect. He was kind of a dark pink colour. But l-, he had a perfectly formed face and you couldn't see any problems, any abnormalities with him. Which was good because I don't know how long a 20-week-old baby's legs are meant to be - so I couldn't tell. And obviously the problems with the bowel, the stomach, the brain, the heart, you couldn't see. 

So it wasn't that we questioned whether there was anything wrong with him, it was just a case of, well we knew we wouldn't be able to see them, but we just were frightened what we might see. And he was just a tiny baby. And I've seen them, we donate to the charity Tommy's, and they send information through about premature babies and you see photographs. And he just looks like one of those but he's not alive. 

And we just looked at him. We didn't pick him up because he was in his basket and he was just, like he was only about this big, and I didn't really know what to do. And maybe looking back I wished I had have picked him up, but I think I was still a little bit frightened, you know was he cold and how would he feel? And I touched his face, and it just felt not how I would think it would feel when you touch somebody else's face. Obviously it was cold and it was quite sticky and felt a bit like a jelly. And I just maybe felt, 'well, I don't think I will pick you up.'  

But looking at his face he looked, his profile, and I said to my husband, 'He looks like your mum.' And he did, you know, he looked like somebody because obviously his features were formed and he had a face. And it was quite upsetting to think, 'well, he looks like my husband's family.' And so we left from there. And I felt better for that. I'm glad I did it. I don't know, if we'd have rung up and she'd have said, 'Oh, well, the baby's in the mortuary and you can't see him,' I don't know what, I think it would have made everything a lot worse. Because I would have been carrying guilt with me which, I don't carry any guilt round with me now because I couldn't do anything to save him. So I'm glad we did see him. And I think looking back I wish we had have seen him at the time, but we saw him a couple of days later, so.

Says that she felt relieved that the termination was over and that she and her husband could get...

And that happened and I came back. And my husband was given like a camp bed so he could stay in the room. And I don't think I could have managed it if he hadn't been there. I don't know how I would have coped. And it's not something you kind of expect that they'll say you can get a camp bed and your husband can stay with you in hospital. But at the time I didn't think much of it. But when I'd got back from the theatre and he was there, and all night I just kept saying, 'I love you and I'm glad you're here'. And it was just, I just needed him to be there. But I felt, I don't know, in a way I felt great. I felt, 'right, it's done now, it's over with. Tomorrow we can go home and get on with our lives.' 

And the next morning I got up and had a shower, my husband was still asleep, had a shower and got kind of freshened up. And I phoned my dad and I phoned my mother-in-law and I was like, 'Look, everything's fine. It's, you know, it's all done'. And my husband had phoned them that evening but I felt like they might want to know that I was okay. And it was, 'Everything's okay and we're coming home soon. And, oh, I'm glad it's over with'.

Describes her baby's funeral and how the weather seemed to match her feelings and explains why...

They asked if we wanted a post-mortem and we said, 'No'. And then the hospital said, 'Right well, we'll organise a burial. We've got funeral directors who we deal with and we'll pass on your details.' Which they did, and the funeral directors organised everything and they said, 'The burial will be on this day at this time.'

And it was really pouring down that morning, really badly, almost as if, it was like even God was mad. And my husband and I went - we decided that we didn't want anybody else there - and I think in a way that was a wrong decision. I wish maybe we'd have asked our parents to come. But my husband's mum was so upset that I think she would have been more of a burden than a support. 

And then I think we were worried we'd have to keep ourselves together for people which, we just wanted it to be us. So we went, and the funeral service came in a car, and we went into the little chapel in the cemetery, and they just did a few prayers. And I really can't even remember anything about it. I think some of the worst parts, I don't know, just some parts are just completely blank, I just can't remember. 

So they did a little service and then we went to the cemetery. And they just had the baby in a tiny coffin, a little white coffin, and they just buried him. And then we went home. And then in the afternoon we took my husband's mum back to the cemetery. And it was nice because we went back and it was sunny by this time. Because it was only July so it was a, just strange that the weather was like it was in the morning. But it was sunny, and they'd put the grass over the top where the coffin was. And we took some more flowers. And it just seemed right then that we'd gone when it was all covered over with the grass and the flowers were there and it was sunny, rather than a big hole in the ground where it was pouring down and we just left. So I felt better for that. 

And then I think after that it was just a case of, we'd done everything, we'd done all the steps we needed to maybe try and get on with our lives. Not that we did a very good job for a while, but that was the end of the saga as it were.

For about 18 months after losing her baby she found herself feeling resentful of women who were...

I think the only one thing is the worst thing for me afterwards was not being pregnant. And when you're pregnant people make a fuss of you so much. And all of a sudden they want to avoid you because they don't know what to say. And I couldn't bear seeing pregnant people. I hated it was the worst thing, pregnant women and babies afterwards. For 18 months afterwards, when we were trying again for a baby when we'd lost one, I hated it and I couldn't bear, I could spot a pregnant woman in the shopping centre by a mile off. 

And I used to see people and I used to think, look at people and judge them and think, 'you're not worthy, why have you got pregnant and I haven't? And why have you got a healthy baby and I can't have one?' And I just felt so bitter for so long because these people had what I wanted and I didn't think they deserved it. 

And I'd say to my husband, 'We've got a nice house, we both work, we've been together for however many years and we love each other and we could give a baby a really great home. And look at them, why have they got a baby? That's not fair'. And I think it was such a massive part of getting over the whole thing, this bitterness eating away. It was, it was just awful. 
 

Everyone thought she was alright but she decided to have bereavement counselling for 10 weeks...

So from the midwife I went, I think I had a couple of weeks off work, then I went back to work. And then I had a few more weeks off because I couldn't handle it because of the nature of the job I was doing, involved in hospitals and things. I just couldn't bear it really. And I think I thought I was going to cope a lot better than I really did. I was saying to people, 'Oh well, I'm all right and I'm going to be fine'. And really I just wasn't. So I struggled for quite some time. 

And eventually, well, not eventually, after maybe about a month I'd got a lot of books from the library about miscarriage and stillbirth. And I just needed to read anything I could, to read about other people who it had happened to, and just so that I didn't feel like I was on my own. And after about a month I arranged, I don't really remember who I arranged it with, but I went to see a bereavement counsellor. And I saw her for about 10 weeks and I just went through things, what had happened. 

And I think after the first month or two I felt that my friends and family thought I should have stopped talking about it. And it was just an excuse every week for an hour to go and speak to somebody about it and not worry that I was burdening them or that they thought I should have got over it by then.
 

Looking back she realises that she put her husband under strain because she was so determined to...

He was putting on a brave face for me. 

And I was desperate to get pregnant again and that was the most important thing to me. And month after month I didn't. And I think that was a strain on my husband as well, worrying that physically I wasn't back to normal, mentally I wasn't, and I wanted a baby and it wasn't happening. So I think my husband was just, I think he felt bad himself but his main concern was me, again he just was worried about me. 

And we spoke about things and it brought us closer together, definitely. And it made us appreciate things more. And it made me a lot more sympathetic towards other people and made me realise that things aren't always straightforward. And you just, I just think it did, we did realise how lucky we were in a lot of ways. And now it makes us realise how lucky we are that we've got our son.