Interview 28

Age at interview: 43

Brief Outline: She has polycystic ovaries so took clomid. Experienced 3 miscarriages then conceived twins. 5th pregnancy' 11-week scan detected twins. Nuchal scan at 14 weeks indicated twins had Down's syndrome. 2 CVS tests done at specialist centre, Down's confirmed in one twin. Selective reducation of one twin by feticide at 15 weeks. Other twin continued to term.

Background: Pregnancy ended in 1995. No. of children at time of interview. 3 + [1]. Ages of other children' 12, 12 and 9. Occupations' Mother - nurse, Father - insurance broker. Marital status' married. Ethnic background' White British.

She bursts into tears when she finds out she is expecting another set of twins because she feels she cannot cope (one of the twins had Down's syndrome).

And when they were about 18 months old my husband and I decided we would like another child. And probably fairly quickly I fell pregnant again. Again having taken fertility drugs. Never for one minute did I ever think it would be twins again. But it was [laughs]. And I remember at the, I had a scan at 11 weeks because they wanted to check that everything was fine, and the ultrasound woman said to me, 'It's twins again'. And I burst into tears because I'd found it very very hard having twins. And I was absolutely gob smacked and I was not happy at all. I was, I was very distraught for about, probably about a week I suppose until I came to terms with it almost. And then I kind of thought, 'Okay no, this is okay, this is fine, I'm happy now'. Just, I think it was the shock of finding out I was having twins again.  

At the time the twins were, my first set of twins were 2', just 2', and I just couldn't envisage how I would have 4 children under the age of 3 basically. I just didn't know what I'd do. But I kind of got used to the idea and that was great. And my husband was really really happy as well, so we, when I got to about 12, 13 weeks we did start telling people, and everyone was, 'Oh, my word, no not twins again, but okay'.

The nuchal fold test showed that both her twin babies could have Down's syndrome.

About 14 weeks I had a call from our local hospital that said, 'We're offering routine scanning to women to do the nuchal translucency test,' which is where they measure the skin fold at the back of the neck, and, 'Would you like to come in?' And I said, 'Oh, yes, I would'. And at that time I was very excited, any opportunity to see the babies again was wonderful. And I went in with my sister, because I think my husband was working, and I also had my twins with me as well in their buggy, and we wheeled into this scanning room, which was very small. And my sister had never seen a scan before so she was quite excited as well.  

And when they put the probe on my tummy they had a good look and they actually said they thought there was a problem with both the babies. They had measured the skin fold at the back of the neck, and said that it indicated that they both had Down's syndrome. And that was just horrendous, absolutely horrendous.

She explains why she had several CVS tests done and how anxious she felt at the time.

But the whole gamut of ideas' anyway the next day I, we went up to the [city] teaching hospital and we saw the consultant there, who was absolutely out of this world, he was absolutely superb. And he said that he also did find that, he wondered if both babies had Down's syndrome or probably something similar and what he suggested we did was have a CVS taken from both placentas.  

Because I was expecting twins obviously they were, they were non-identical, and we didn't know they were a boy and a girl at that time, but I think he could probably tell. And so he took a CVS, a sample of the placenta from each baby. And he, they couldn't actually manage to do the CVS, so they had to do it again. So it was really uncomfortable and it was, as well as being totally bogged down mind-wise, it was actually very uncomfortable as well. And he then said basically, 'What you now do is wait. You wait for probably up to two weeks. We'll get the results back to you as soon as we possibly can'. As I say he was absolutely lovely.

And the next two weeks were, oh, absolutely horrendous. It's difficult thinking about it even now really. We just, you know, well, I basically, I think I sat on the sofa for two weeks, because after having had the CVS they said, 'There's a slightly increased risk of miscarriage'. So I was very scared about that. And I just waited. And I was on my own at home when the phone rang, and it was, I think it was a midwife or one of the counsellors that, at the hospital. And she said, 'Are you on your own?'  And I said, 'Yes, I am'. I said, 'But I just need to know'. I didn't want to wait for anyone else to get there. And she said, 'It's a boy and a girl'. 

And the midwife said, 'You're expecting a boy and a girl, and the boy has got Down's syndrome, the little girl's fine'. So on one hand it was the most immense relief that our little girl was fine, but we were devastated. And I think I phoned my husband at work, and I think he was very like me, he just wanted to know. And I felt very mean telling him over the phone, but I had no choice because again he wanted to know. 

Explains how her decision to end the pregnancy was influenced by a friend whose brother had Down's syndrome and who knew he was 'different' from other children.

Yes, I think, something that really struck me was when I was my, the older twins' godmother has a brother who has Down's syndrome, who's older who must now be, he must be 42 now. And I remember her saying to me when I found out that our son had Down's syndrome, I remember her saying to me, she said, 'You know he does know that he's very different, don't you?' And I said, 'Well, what do you mean?' She said, 'Well, just because he's mentally retarded, you know'. He would regularly say to her, 'Why am I different? Why are people so horrible to me?' Because as a child, children are cruel, and therefore he had a very difficult time I think. 

And I think, I always used to think he wasn't really aware, because of the mental issues he had that actually it went over his head. And when she said that he was very aware as to what was going on, and how hurt he became, and I thought, 'Wow I've never kind of seen it from that side I suppose'. And I just came back to, I just did not want that for my son really. 

As a nurse she encounters women who have not been given information about how their pregnancies will end.

Probably if I hadn't, I mean if I hadn't known about ARC (Antenatal Results and Choices), or SATFA as it then was, nobody gave me the information at all. I literally... I think I went on the internet, and I found their number. And it's very sad that that's still happening. Because I know where I work I've had an incident recently with a, with a mum who sadly went onto have a termination and had nothing. And it was only when I happened to pick her up during a routine GP session really and found that she hadn't been given anything either, and I was able to give her the information. But if I hadn't had that where would she have gone for it? Which I think was very sad that even now, 9 years on we're talking about, so a good long way, people still aren't getting the information, which I think is very, very sad.

She felt isolated and alone even though there were about 9 medical staff in the room watching her.

But I do remember when they did the injection into my stomach, which is very much like having an amnio really, where they're sticking a needle in, and I couldn't really watch it on the screen. I think I tried to, but part of me didn't want to watch it either. I think I could see the needle going through my stomach, and he turned the screen away. And he made me hold onto his hand, onto his arm, which I think is something he does, whether to kind of centre you or I don't know really, for comfort. And he, he said, 'Twin two is dead,' just after he'd done it, and that was very hard. And part of me felt that having said, 'Twin two's dead' was very callous, but actually I think, maybe being a nurse myself, I was trying to look beyond it, and I think he was leaving us with no doubt as to what had happened. And that was probably very good because otherwise we might have gone away still wondering whether our little boy was still alive or not.  

I must say, when I was having the scan just before I had the fetal reduction and when he was doing the fetal reduction, the room was packed, absolutely packed. I mean in my mind's eye of not really being terribly with it at the time, it seemed like there were 20 people in there. Probably in reality there were 8 or 9 plus my husband and I, because it's a very large [city] teaching hospital. I would have thought it's not something they do every day, maybe they do, I don't know, but people need to learn. 

And I remember lying on the table and he'd done it, and I sat up and my husband was, I was crying, and my husband was cuddling me, and I remember all these people just looking and staring. And I didn't care, I actually didn't care that they were there. I wasn't embarrassed that I was crying, I didn't feel anything. But it was quite voyeuristic - is that the word - it was very much people looking almost helpless, and not you know, they were totally not, oh, sorry, not involved. It was very much, you know, that they, there's nothing they could have done. And it, and I kind of, you have these flashbacks where I can actually see these two people, one sitting on the table crying, the other cuddling them, and a circle of people around them just looking. You know, if I could paint, that is probably what I would do, which would probably really depict the isolation that you have there, two people in the middle and people around. 

And I think that's, maybe that's the... the most startling thing about it is the isolation. It's the fact that, thank God, not many people understand where you are at that time. But I think that's very difficult.  

Explains why the scan photographs of her son matter to her and give her comfort.

I can't explain this very well, I think, I have nothing to show for the fact that my son died, you know. I have a few scan photos and I keep them in a box, but in a way it's like a memorial I suppose. And that's very strange and I can't quite explain it very well, but it's quite comforting because I know that, that he existed I suppose. 

And I think that's quite important to me definitely. And I think when you don't have a headstone to go to, when you don't have a place to go to, you need a memory in your own way. And so when I get sad, I know it doesn't happen very often at all, I don't spend the whole time like this, [laughs] it's actually quite comforting because I think, 'Well, he did exist, and it does matter. I don't mind if it doesn't matter to anyone else but it matters to me'. And I think that's very important, it is, it is for me. 

She felt she shouldn't grieve for the baby she had lost when she had another healthy baby alive and well and she found ARC (Antenatal Results and Choices) helped her to acknowledge her loss.

And that's how it still is, you know, there's still something missing, but not to the point where you can't live, you know. I do, I have a wonderful life, I really enjoy life but there's always going to be something missing I think. But when I was about 4 months, when she was about 4 months old, I remember sitting there crying and thinking, you know, 'This just isn't right'. I didn't think I was depressed at all, I just thought I was very very sad. 

And I rang ARC, (Antenatal Results and Choices now - they were SATFA at the time, which is Support Around Termination For Abnormality), and I'd had a little bit of dealings with them in my work, only really referring people onto them. And I remember phoning up and saying, 'I just don't know what's wrong with me but I'm just desperately sad'. And I told them why. And it was like this 'light-bulb moment' and this woman said to me, 'Well, you've lost a baby'. And she was so matter-of-fact and she said, 'How do you expect to feel?' And I thought, 'Oh, you're right'. And it was almost somebody gave me permission to be sad and to grieve. And I don't think anyone had done that before, or I don't think I'd allowed anyone to do that maybe. I was, I'm very much a coper, and I was very much, 'Right, you know, this has happened. I've just got to sort it'. And it was, it was very, it was a very good moment, to kind of think, 'Okay, I'm allowed now'.