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Interview 10

Age at interview: 31
Brief Outline: Her 2nd pregnancy' 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then she has had another baby.
Background: Pregnancy ended in 1998. No of children 2 + [1]. Ages of other children at interview' 6, 4. Occupations' Mother - nurse, Father - warehouse manager. Marital status' married. Ethnic background' White British.

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She and her family went to the 20-week scan and were asked to return in two day's time when she...

She and her family went to the 20-week scan and were asked to return in two day's time when she...

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Where we were living then at the time you only had a scan at 20 weeks. So at 20 weeks I went for my scan with my husband, with my daughter, to get our photographs. And it was Christmas Eve and at the time I didn't think, the sonographer did spend a little bit of time scanning us and queried my dates several times and then explained that she couldn't quite see the baby's heart properly and would we come back in a couple of days?  

At the time the same thing had, exactly the same thing had happened to my friend a month before, and her scan was absolutely fine. So when that happened to us I really didn't worry, I thought, you know, it was literally the baby was in awkward position, they couldn't see the heart and that was why.  

So we went back the day after Boxing Day, the 27th, and the consultant greeted us, which made my alarm bells go, and she started scanning us and I think her lines were, 'What concerns me about this baby is that they've got a diaphragmatic hernia, which has meant that part of the stomach of the baby was in its chest cavity.'   

And then I can't remember an awful lot more about that scan apart from that feeling of searching of how to react in an unknown situation - your brain's kind of trying to work out what to say, what to do, but I had no idea what to say or what to do and I think my first thought was, does that mean our first daughter's okay? Could she possibly have something that's not been detected?  Which she reassured us that she'd be absolutely fine, this was a one-off.  
 

She explains why she feels that it was more ethical for her to end rather than continue the...

She explains why she feels that it was more ethical for her to end rather than continue the...

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And occasionally the debate will come round about reducing the, the limit to, of 24 weeks gestation, reducing that down for termination. And I think it's just that frustration that, you know, it, you know, the tabloids or the newspapers, it's all done very dramatically and it's like nobody's stopped to consider that a small percentage of people having to have terminations at such a late stage that in fact what position those people are in. I don't think there's many people having terminations at 24 weeks because they've decided they don't want the baby, you know. 

And it's that frustration that the people, whoever you're talking about, the politicians or the people who have views on it, haven't stopped to think what it must be like to find out that, you know, this much-wanted baby you've got actually has, you know, has got abnormalities. 

And I suppose as well, as you know I was saying before, you know, we found that our baby had got a fatal abnormality where her quality of life was going to be debatable, really. I couldn't see that there was going to be any quality of life, therefore I almost felt a sense that ethically it, you know, it could, it might have been ethically or unethical to continue and for her to have a horrible, you know, suffering, you know, days or weeks, perhaps it was more ethical for her to die of her prematurity than of her abnormality. 

But there is this just, this presumption, I suppose, of termination of pregnancy means that you're terminating a pregnancy because you don't want the baby. You know, there's no mention of the much-wanted baby or... So when that debate comes up it just frustrates me because they never ask anybody who's actually been there, and I think it's one of those, until you're there you can't imagine how you're going to feel. 

Yeah, if she'd have been born at term and for example, lived for a week, you could have say, 'Well, that would have been nice to have had her for a week,' but she would have been suffering terribly so it, I just think it's purely selfish reason for me, for my benefit, that I would have liked to have had her a little bit longer. But for her that, for, you know, and for us as a family, and I believe that for her it was best that she died of prematurity and therefore died peacefully, you know, without. 

I read a few stories of people's experience of living with a child with Patau's syndrome and, for me, as I read it I just thought, 'Not for my daughter, no way'. You know, I just thought, there's no quality here, and plus I suppose, again, my experience of perhaps looking after some children at work, that I've seen that are so poorly, and it is, it's terrible and you just think, 'Not for my child'. 

You know, in that the position that you were given a choice and you've got a decision to make on behalf of your child, far as it was quite easy, you know - not easy but the decision came - and I never had any regrets, and 100% you know [I] was sure that that was right for us. 

 

Her views on termination changed when she realised that her baby would not have survived for long...

Her views on termination changed when she realised that her baby would not have survived for long...

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I mean, at first, when we first discovered that, you know, there's a problem with our baby, my instant reaction was 'Well I'll be going to term, because there's no way I could sign a consent form for a termination'. That was my instant reaction, but then as time goes on, and we agreed we'd talk about it every day, that we must sit down and have a conversation about it every day, and you know, agreed that we weren't, you know, we would just talk if we needed to say something. 

And I think as time went on, and you are just, you know, looking into it more, your initial emotional reaction changes, and you start actually thinking about what the implications are for the baby, for our daughter, for us. 

And I mean, our main - I mean obviously this is over several days, you know - we'd got to this decision and within this the amnio results came back. I think we had to wait 10 days, and the consultant who'd initially scanned us rang me with the results, which confirmed that, yes it was a T13 baby, which was actually quite reassuring because it gave us an answer. You know, your baby has got these abnormalities because they've got a chromosomal abnormality. 

Plus it meant I felt that we could make a decision without sort of having to look into likelihoods and statistics, and whether they'd be fit for surgery at birth and all those kind of, this was, it was almost like saying, you know, your baby, unfortunately, is going to die. They'll die when they're born, and so we were, if you like, the decision was taken out of our hands. I felt it made it easy to make that decision. 

 

She felt pressurised to make decisions before she was ready and wanted more time to decide how...

She felt pressurised to make decisions before she was ready and wanted more time to decide how...

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And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.  

Unfortunately, I don't know whether he hadn't read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, 'Right, you've made the decision to terminate so let's just get on with it,' and, you know, 'Go home and forget about it.' 

And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, 'So, if you want to take them now and come in, in 48 hours,' and I was saying, 'No, you know, I need some time to think about this', and I was thinking more like, we'll be coming in, in 2 weeks' time.  

He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby's heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option. 

I just can't imagine, you know, it was really, one for me, I didn't want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel.  

So when I said to him that I didn't want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, 'Okay.'  

So I said to him I didn't want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband's] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, 'I want to wait a couple of weeks,' his, his comment was, 'But you do realise your baby might be alive when they're born?' 

Which was like, 'Yes.' And that seemed to be a problem, 'Well, that means you'll have to get a birth certificate,' and he didn't for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn't seem to have thought about that. 

And, you know, I can understand that unless you've been in that situation you wouldn't think about things like that, but it seemed like he had a very narrow view of what happens. It's like, you've decided to terminate this pregnancy so 'let's just get on and do it and not think about it, go home and get pregnant again' sort of attitude. 

And he didn't seem to grasp the fact that this was my baby, and I want this baby but I'd found myself in these circumstances, I want this baby to born alive. I want her to have the respect of a, you know, rather than something that's going to be pushed away and forgotten about.  
 
 

She wanted the baby to be born in a normal delivery suite with a midwife present and she found...

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She wanted the baby to be born in a normal delivery suite with a midwife present and she found...

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And so they moved me to a normal, a normal delivery room then to have the epidural. As it happened, there was 3 others, ladies that morning that needed epidurals all at the same time, but it was quite nice, I heard my, overheard my midwife saying that, ' I want you to do my lady first,' which, I don't know, it kind of was nice that I was seen as just as much a priority as the other ladies.  

But as it turned out, I didn't have time for an epidural anyway. I think I'd got, I was doing really well pain-wise and then I got a little panicky and that sort of sent all my breathing off, and I think that was because I was coming up to my second stage and whether that, you know, I knew it was getting close and I kind of started to panic a little bit.  

And as it happened, as I got into that room within, I'd guess minutes our baby which, she was there, you know, I felt something had changed and, you know, and she was there, and I just needed to push her out and she came out very easily.  

And then when she was born officially she was alive for 4 minutes, but it was, for us it was good because she made a few noises, she moved, they delivered her straight to me, which I'd asked for. And so those 4 minutes were just like precious 4 minutes, that it was like, I'm not getting much out of this but, you know, 4 minutes and a birth certificate, you know, that's all I'm going to get so I want it. 

In terms of us feeling differently, when she was born I felt very, very relieved. I felt very calm. I felt, not happy if you like, but I was, I was happy that it had all gone straightforward and that she was here and, you know, we were there. 

In contrast, that was the fact, the point that my husband found was really difficult, was when she was born because I think the reality hit him, that, because obviously before he couldn't feel the baby, and suddenly it was, it was difficult for him. And that was, I suppose, one of his moments that he would have said it was the worst time. But for me it was actually one of the relaxing calm parts when she was born.

And I felt very relieved, you know quite... So when she was born and, obviously, then 4 minutes later, the midwife just checked on her and her heartbeat had stopped. And then they just left her with us, with her for as long as we wanted. 
 

Explains how her baby's funeral helped relieve her feelings, and that she valued the care taken...

Explains how her baby's funeral helped relieve her feelings, and that she valued the care taken...

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It was all done by the hospital. I mean, at that stage I had absolutely no ideas about what you do in terms of funeral arrangements. And the hospital asked, just asked us, you know, explained that they had something set up with the local funeral directors and would we be happy for that to go ahead? 

So, you know, we just said yes, and the hospital chaplain said she'd do the funeral for us. Where we were living there's a particular area within the town cemetery that's a baby memorial where the babies are buried. So they took care of that and we were able to go down to the funeral directors and we left a blanket and some photographs and I think, bought her a little toy that we wanted to go in with her. 

And then the funeral again, was another day where I felt really relieved and calm, but my husband found it was one of his difficult times, again because of the reality of it, I suppose. As funerals are, they sort of bring it home. 

But I mean I was really impressed, I mean, the, the funeral directors, it was a free service that they provided, which in these days, you know, these times was just, I thought it was wonderful that a business did it. And they brought her in a hearse driven slowly. She was in a wooden coffin with a name plaque. They'd put a little pink rose on the top. It was done really, really nicely and I just thought, as a free service that they were offering, it was really nice and I found it, the funeral quite, quite calming. 

Very strange, I mean a few friends came and [husband's] parents came but I didn't feel like it was an event to invite everybody - it's getting a balance between it being private and - but at the same time she was our daughter, sort of thing.  

So we just had a little, a little service by the grave and, and then Concorde went over, which I really liked, that she'd got a fly-past from Concorde. It came straight over us so that was quite noisy but that was, you know, it was that kind of...

And then we just went back to the pub and had a, had some lunch and a drink and it was nice because everyone had got the afternoon off work and I found that day really, really relieving, I suppose that, because of having that interim period of not knowing where she was, suddenly now it was, it literally was that feeling of, you know, she's at peace now, I know exactly where she is, I know that she's safe. 

 

She found it difficult to admit she needed help and tried several complementary therapies,...

She found it difficult to admit she needed help and tried several complementary therapies,...

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I mean it took me a lot to go to the GP and actually admit that, you know, I'm not doing so well, I need some, well asking for help, I suppose, which was quite difficult to do. But when, I suppose when I found that there wasn't an awful lot she could offer me, I decided that perhaps if I make myself physically better then, then emotionally I'll be better. 

So I just kind of went on a bit of a health drive, which I thought would be good before getting pregnant anyway.  So I used to treat myself and have an aromatherapy massage every month and some Shiatsu every month. Just tried to eat a little bit healthier, do a bit more exercise and it, and it did work, you know, physically I felt better, so emotionally I started to feel a lot better. And I think that was probably good as well as a build-up towards getting pregnant, just having a bit of a, because as, you know, when you are low you do get into that vicious cycle of not really looking after yourself very well and perhaps not eating as well you can and, you know, not eating as much fresh fruit and vegetables and things because you just want comfort food.  

So that was my sort of way, I think, of getting myself a bit more prepared to be pregnant was just trying to be physically healthier and the knock-on effect to then.
 
 

Describes how she was pessimistic throughout her subsequent pregnancy but that after her son was...

Describes how she was pessimistic throughout her subsequent pregnancy but that after her son was...

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So we started trying again and it, we didn't take long but I think it was about 4 or 5 months and that was difficult because every time your period starts, you know, it's those feelings of failure and disappointment and sadness all come flooding back. And once you've made that decision that, right, I'm ready to be pregnant, it's, I want to be pregnant now please. 

So for a few months it was difficult and then I found out I was pregnant and it was alright but I was very pessimistic and paranoid for 40 weeks, which isn't very nice for 40 weeks to feel like that when you should be happy and 'isn't it wonderful', and people asking about names and things like that, and I just couldn't have that conversation. It was, until this baby's in my arms, in fact, until this baby is in the house, away from the hospital, I can't think about me actually having the baby. 

So it was a very long pregnancy, very - how to say it - a very pessimistic pregnancy. And then [the baby] was born. His delivery was okay but at, he got very distressed in the delivery and at one point his heart rate plummeted and the midwife had to get the doctor. 

And I mean, this is just looking back, I just thought it was awful because I laid there thinking, 'This is it, this is where the baby's going to die'. You know, just lying there waiting for it to happen, almost like resigned to the fact that, 'This is it'. 

And then when he was finally born he was very distressed and the paediatric team took him straight away and I could see sort of metal glints and oxygen tubes and suction, and I lay there waiting for them to turn round and say, 'I'm so sorry.' 

So when they turned round and went, 'Here's your baby,' it was like oh reality. Suddenly I can relax and he's alright and it was quite a shock. But I was quite surprised at how resigned I was to the fact I was going to lose this baby as well. 

And then he, I mean, he was born and he was fine. He was born in the evening, quite late in the evening, about 9 o'clock, and then the next morning I was, I want to get out, please, because I just wanted to take him home and just put him in the car and drive away and, which we did and, drive away, looking back thinking I'm never going in that hospital again. That's it.  

And then when, when he came along it was like a ton of bricks off my shoulders. Suddenly I realised I'd been carrying [that] round for 2 years, and then suddenly I'd not got it. 
 

She looks back on all the things that have happened to her and feels that she is more...

She looks back on all the things that have happened to her and feels that she is more...

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He was, you know, it was just wonderful to have him and he's just brilliant. And both of them, I mean, my daughter will always be special because she was around when it was happening and she kind of reminded me that, yes I can do it, I can have a normal baby. And she kind of pulled me through the bad times. And then I've got [the baby] who's just so special because he, you know, plus, you know, if we hadn't have gone through that we wouldn't have him. 

It's that kind of, when you look back and reflect on it, you know, for whatever reason I just sort of think, you know I had to go through that experience, and it's made us better, it's made us appreciate life more. It made us appreciate our children completely, you know, and never take for granted what we've got and how wonderful they are.  

And, you know, if we hadn't have got through that we wouldn't have him, you know, we wouldn't have 4 years gap between our children and all the implications that has. It's just, you know, you look back and you think, well that, obviously, was just the way it was meant to be. 
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