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Interview 21

Age at interview: 41
Brief Outline: She has had 2 children (1st and 3rd pregnancies), 3 miscarriages and ended 1 pregnancy. 4th pregnancy' had some bleeding, arranged first scan privately at 8 weeks. Felt unsure of viability of pregnancy, had 12 week scan, no anomalies found. Arranged nuchal scan and blood tests privately and several anomalies were detected. CVS identified Edwards' syndrome. Pregnancy ended surgically at 15 weeks. She has had 2 miscarriages since the termination.
Background: Pregnancy ended in 2002. No. of children at time of interview' 2 + [1]. Ages of children' 7, 4. Occupations' Mother - mother, Father - management consultant. Marital status' married. Ethnic background' White British.

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She was not expecting to have to make a decision about which test to choose (she chose CVS) and describes how her feelings about these tests changed once she realised her baby had problems.

She was not expecting to have to make a decision about which test to choose (she chose CVS) and describes how her feelings about these tests changed once she realised her baby had problems.

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I was a bit worried about it, because they're sort of putting a large needle into your stomach, which you know was a bit alarming. But I think, to be quite honest, by that stage I was in such a shock, and anything could have happened, you know it felt like anything was possible on that day. Then I don't know, I think when you've been given such bad news that you're not expecting to hear all sense of judging things, a normal way of judging things, goes out the window, in that particular time and on that particular day.  

And it felt like the goal posts had moved. I mean I hadn't wanted to have an amnio in the course of a normal pregnancy, and that's why I'd gone for the nuchal scan to sort of try and get more information. We'd done that, we'd got more information - and there were problems - so the goal posts had moved really. It wasn't a normal pregnancy any more.

And I am the sort of person I think - I'm sure lots have said this but I don't know if everybody is exactly the same - I'm the sort of person who needs to know, I'd rather know. So there was no way I wasn't having that CVS. And it did feel a bit like, 'oh gosh' you know, but she seemed very experienced, the consultant that did it, and I felt very confident in her that she knew what she was doing, and I sort of thought, 'Well, I'm prepared to take the risk. I'm prepared to take the risk. If it will cause a miscarriage, we need to know what's going on here, and this is the only way we're going to find out for sure'. 
 

She and her husband felt paralysed by shock when they heard that their baby had Edwards' syndrome.

She and her husband felt paralysed by shock when they heard that their baby had Edwards' syndrome.

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Yeah, when we were told that the baby was, you know that there were things wrong with the baby, and the doctor started talking, and she mentioned Edwards' syndrome, and I know my husband was sitting beside me, but I think we were both, I mean, it was an absolute bombshell. I don't actually, I think we were both just completely and utterly stunned. And I think he was much like, and I don't really know, for sure, what was going through his head, because my head was so full with, I just couldn't, didn't know what to do with this. 

I think, we have talked about it - I can't remember exactly what he said about that - I think he was much the same as me. We were both just like, 'What?' You know, just, it was, it's severe shock. Its severe shock and, you're just almost paralysed by it. You just... you're just hearing words being spoken and they don't really make sense. 

And she was good. She did, she just, I think she just said, 'Look, I'm really sorry. I know this is a terrible shock', and just remember sort of sitting there, sort of like, I can't even remember, I probably cried. I can't actually remember. I was just... I just didn't know what was going on, to be honest. 

 

She couldn't stop reading the ARC (Antenatal Results and Choices) booklet about ending a...

She couldn't stop reading the ARC (Antenatal Results and Choices) booklet about ending a...

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I didn't really know what Edwards' Syndrome was, was just beginning to get some information together. Most people I, hardly anybody I spoke to, knew anything about it at all - family or friends - and to actually have somebody on the phone who said, 'Ah, yes', you know, 'I know what you mean', and knew kind of what we were going through really, was, was, just listened, was really, it was really, really helpful. 

And also sent, you know, they had lots of booklets that said, 'Oh, we've got a booklet on this', which you know there was a booklet they had about, you know, one about telling children, or telling your kind of grandparents, or what they could, you know for grandparents, I think it was. Another one which on the helpline, the lady at ARC said, 'Well, we can send you this, we know you may not want it yet, but it's about kind of a termination, about the kind of decision-making process and, you know, we could send that to you now, or we can send it to you later. What do you want?' And I said, 'No, send it to me now'. I thought, 'I'd rather start reading,' and that was good.  

And then the, two days later, the booklet arrived from ARC in the post, that's about termination, and I think I wasn't even dressed, my husband was going to take the other one to school, my oldest daughter to school, and I wasn't dressed, and I opened this booklet, I was eating my breakfast, and once I started reading it, I couldn't stop reading it. 

And one of the first things I read really shocked me, which because at this stage, I would have been 13 weeks, and I read that from 13 weeks on, if you have a termination, you have to give birth, and I'd had no idea that was the case. And I just couldn't believe it you know, I virtually broke down I think I read that when my husband was taking our daughter to school, and by the time he came home, I was in a right state, you know. I just had no idea. I don't think I'd really thought that much about, I'd sort of realised the word 'termination' was potentially on the horizon, I'd assumed it would be some sort of surgical procedure. I hadn't any idea it meant giving birth. 

 

She only heard about ARC (Antenatal Results and Choices) by accident from a friend after she had...

She only heard about ARC (Antenatal Results and Choices) by accident from a friend after she had...

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Well, I was, I mean, that's actually something that's worth mentioning, that despite the fact we'd gone to a clinic and a hospital who are at the kind of forefront of kind of antenatal stuff and problems, no-one actually told us about ARC. Which ARC were surprised about and actually, didn't actually give, I don't think we really came away with any information, apart from what you've been told verbally. 

We didn't have any leaflets or anything, and it was actually just chance that on the Saturday morning, through... I spoke to another mum from the school where my eldest daughter went to school, about something, and she'd known I was pregnant, and I just mentioned, I said to her, 'Oh, you know just having the most awful time,' and briefly told her what had happened, and she said to me, 'Oh, I'm really sorry'. Then she said, 'Actually, I had a baby who had Down's and I had a termination before'.

Yes, she's had this experience before her daughter, who's the same age as my elder daughter, and she said - I hadn't known that she'd this experience - but she then said, 'Oh', she said, she said, 'Oh, it was just awful. I know you know, really, really sorry, because I know how terrible it is. There's a really good organisation called ARC,' she said, 'I've actually got some newsletters, I'll get them to you'. 

So that's how I found out about ARC, and I think, it was a bank holiday weekend, so, the Tuesday I think, I was on the phone to them, as soon as their, kind of their helpline was open again, and they were fantastic. Just to find some, somewhere a source of information, somebody who knew what you were talking about when you said Edwards' Syndrome, who knew what you were talking about when you said, when you sort of explained about the tests, or talked about what was happening at the hospital, would say, 'Oh well yeah, you know, this should happen next, or...', was just fantastic, it really was.

 

She was booked into a day surgery unit at the last minute because she wanted to avoid going...

She was booked into a day surgery unit at the last minute because she wanted to avoid going...

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It was you know, it was, it was awful. When it came to the... actual termination, I was sort of wheeled into the theatre. I think my husband, I think he must have come in with me, and then sort of taken out. And I just remember lying on the bed and looking at the... you know, looking at the room, and the next thing is, I was asleep. And it only took half an hour. 

And the next thing is I was awake again, and... I think, I don't know about a surgical termination, I mean, there are, it's swings and roundabouts, but when I woke up, what I saw, and the image that haunted me for a long time afterwards was, there was a sort of a little trolley that obviously had a container - you can't see your baby when you've had a surgical termination because a, like a vacuum is used so, you know wouldn't be recognisable as a baby I suppose so you can't see the baby - and there was this container with a white cloth draped over, which... and I remember waking up and thinking, 'Oh' you know, and I felt fine, a bit groggy but fine. And I just looked at this you know, I mean, I just wanted to pull the... you know, [I] was just like so drawn to this, and that image did haunt me. I mean, it still does, it really did for some months afterwards, that's what I would see you know like this burning, you know, vision. 

I think it, to be quite honest, it was a bit surreal having a termination like that. What I felt afterwards - I felt different - I felt physically empty, and it was very bizarre to think, 'Well, I was pregnant this morning, and now I'm not'. It was horrible actually and it was horrible going to bed that night. I sort of wanted the day to end, because it didn't feel right you know, so much had happened in the day. And I don't know... it's not so much I think it was the wrong decision, because I understand why I made the decision, and I think it would have been terribly hard to have said, 'No, I'll go ahead and have labour to terminate this pregnancy,' but I don't think it was the right you know, I do wonder if it was the right thing to do. And if I, I hope I never find myself in that situation again, but if I did, I don't think I'd have a surgical termination, just because I think I'd like to have seen the baby and I didn't. 

And I think, you know I've read quite a lot, heard about other people's experiences, who have had terminations in similar situations, and some people do choose not to see the babies - some people think they won't see their baby and then decide to at the last minute - almost invariably where people do see their baby, while it's very distressing at the time, afterwards they're like, 'Oh I'm really glad I saw my baby, and I'll never forget that and I've got a picture'. 

And I do think, in the months that followed, it was very hard for me to make sense of what had happened. It would have been a very traumatic and very difficult to have given birth to the baby, and seen him, but I think it would have made it more real. I think for me personally - and it may be a lot to do with my own emotional make-up - but there was a bit of an issue of, the whole thing just felt, seemed like a complete and utter nightmare. It didn't seem very real. It seemed so awful, it seemed unreal. And I wonder if seeing a real baby may have helped me to get back some sense of reality. But I would have had to have paid quite a price for that. 
 
 

She's learned that you can recover from ending a pregnancy and put your experiences to good use.

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She's learned that you can recover from ending a pregnancy and put your experiences to good use.

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I think I've learnt that however, however bad, however bad something is that happens to you, you can recover if you want to. It doesn't mean you don't get sad about it, doesn't mean it doesn't really hurt at times, but if you, it's your choice. It's your choice, and you can, it may be really really hard at times - probably more at the beginning - but if you really want to you can find a meaning in your life, you can fight, there will, there is, are other things. 

I mean, I've got my children - whatever it is for people, be it their work or something - that life does go on, and that, and I suppose, you know, there have been, I sort of have felt that I wanted. I think, for me, one of the reasons in coming to terms with it a bit more, coming out of depression, was thinking, 'I want to put this experience to some good use. I don't want'', you know, 'it happened to me. I can make some good use of this. I can help other people in some way.' 

And I thought about training as a midwife. I have actually started some training as a counsellor. But for me, I sort of thought, I mean I don't know for sure, I think I will continue with that, but if I choose not to, that was part of the path of recovery if you like, even if I change my mind about that further down the line, it wouldn't really necessarily matter, it was about, 'I can put this to some constructive use'.
 

She tried to be normal for the sake of her children but eventually saw her GP and was offered...

She tried to be normal for the sake of her children but eventually saw her GP and was offered...

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I think time helped. I mean, I, personally, went to see a counsellor, which I think helped me a lot. I was getting a bit stuck, because I'd then had problems I'd actually had a miscarriage four months later, an early miscarriage, and then I couldn't get pregnant for ages and ages and ages, and I, it just got worse. You know, everything, I think, the roots were there anyway, I hadn't come to terms with what had happened and I, it just sort of got compounded by further things happening. 

And I just, I think I got to a point where I knew I had to do something. I just felt, I knew I wasn't really functioning very well.  I wasn't my normal self, and I didn't really enjoy anything very much at all. I tried to be as normal as I could with my children, but I'm sure I wasn't. You know I mean I was there, doing all the practical things, but I wouldn't be very happy for example, all the time. And I think that was the thing I sort of thought, 'I can't go on like this. I've got to...'. And actually at times, I wanted to jump in the car and drive off and never come back. I wanted to just escape from my life really, because I think I was, I hadn't really come to terms with what had happened, I hadn't really accepted it, it just still seemed like a bit of a nightmare. 

And there were times, like the dates of, I mean, the baby had, you know, the date the baby had been due was hard. The year anniversary of the termination was very hard, and the year anniversary of the nuchal scan - all those dates coming up again were very hard. You know, they've, I've had a second lot of 'dates' and that was still quite hard, and, you know, made me think a lot and I did get upset, but it was much worse the first year. I think time did help. I did see a, I did actually go to my GP in the January, I'd had the termination in the May. I had some, about some other physical problems I had, but also as I say you know I thought I was depressed, and I was really struggling, and he sort of said about, you know, 'Do you think'' but he knew what had happened obviously and he said, 'Do you think counselling would help?' 
 
 

[About her partner] 'He did try hard... he's very good at talking about things'.

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[About her partner] 'He did try hard... he's very good at talking about things'.

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He did say at one point that it was very difficult having to stand by someone and see them go through all this turmoil and not actually being able to fix it - that that was sometimes the most difficult thing. And then we had the problems about the baby's remains, and it was one thing after another, and he wanted to be able to put it right for me, he wanted to be able to help, and there was a feeling of helplessness. And actually, that was, in many ways, the worst thing for him. 

He did have his own pain about losing the baby, but in many ways it was worse having to stand by and watch the effect it had on me, and, and feel that there was absolutely nothing he could do really. I mean, and he, yeah, he did try hard, he did try, he's actually a very good talker, he is actually very good at talking about things, and when I got very, I did get depressed for quite a lot of months, he did, and he could tell when I was in a you know, a really bad frame of mind, and he'd say, 'Would you like to talk?' you know 'Would it help to talk?' and, which I did always appreciate him making the offer, but sometimes, like, 'No. I don't want to talk,' and I would just go to bed and pull the covers over my head. 

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