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Interview 13

Age at interview: 34
Brief Outline: Her 1st pregnancy' heavy bleeding in first trimester caused by ovarian haematoma. 20-week scan found insufficient amniotic fluid - possible premature rupture of membranes. Parents advised that baby could have lung damage/ breathing difficulties - uncertain prognosis. Pregnancy ended by induction at 23 weeks. Post mortem indicated that baby's development not affected by rupture of membranes. Twins born since termination.
Background: Pregnancy ended in 2003. No of children' [1] at time of interview, twins born since interview. Occupations' Mother - programme manager, Father - senior change manager. Marital status' married. Ethnic background' White British.

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Explains what she understood different scans were for.

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Explains what she understood different scans were for.

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The first scan was to check the make-up of the baby - check that there was a heartbeat, check that their arms, legs, head and measure the length of the baby from crown to rump really. So that was what the first scan was for - a basic sort of check really - and I was told that they're limited in what actually, if there is any abnormalities with the baby at that stage, they're very limited about what they can actually find, it's not really till the 20-week scan where they'll pick up most things, especially congenital deficiencies.  

The nuchal scan, we were given a leaflet, sent a leaflet by the hospital before we attended. My husband and I both attended the scan. We were very well informed about what to expect. We knew before going in for the scan, that if there was a problem we would be told there and then, and we would then be advised to take further tests, such as amniocentesis. So we were very well informed about what to expect and how the scan would take place.

 

The decision was not clear cut because no one could be sure of the extent of damage to her baby's...

The decision was not clear cut because no one could be sure of the extent of damage to her baby's...

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We came back, and when you're actually faced with actually having to do it, and actually think about it, it's not as clear-cut as that. 

So we discussed it for a week and I certainly wasn't sure to start with, certainly I wasn't certain about what I wanted to do because I was still very unclear about the final prognosis and, actually how likely we were to have a severely disabled child. Because they weren't able to actually say, 'We can categorically tell you that this will be the outcome of the pregnancy if you continue it - that the baby will be blind, the baby will be deaf, the baby will...'. They were unable to give any sort of idea as to the severity, which made it very difficult, actually. 

We weren't making a decision based upon anything other than, 'This is what we think will happen. This is what is likely happen.' So I found that quite difficult and kept thinking, 'Well maybe it will be okay - maybe things won't be so bad'.  

We did look at a, on the internet at, for a lot of information, specifically the development of babies' lungs, and how they are affected with lack of amniotic fluid. And it did actually become quite apparent that there would be no further development of the baby's lungs, and if I went back to when I think the amniotic fluid may have leaked, the baby's lungs would have been between 19 and 20 weeks, and that's very immature lungs to expect to be able to sustain life. 
 
 

She worried that the pills would hurt her baby and wished health professionals had shown more...

She worried that the pills would hurt her baby and wished health professionals had shown more...

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I didn't have anything, actually. Unless I'm totally and utterly forgetting it, I don't think I had anything. We went from making the decision on, when I had the scan, making the decision to being told there was, again, there was a problem with [baby's] development, with his development with the amniotic fluid. We then made the decision that there was, we were going to terminate the pregnancy there and then. And we were then taken to a room to wait, which we did. 

And it was the same room and, again, there was no, there was no information. But I think I, you know, at that stage you've sort of made your decision, and we waited for about an hour I think, and then I had to take a pill to prepare my body for labour. 

But again, I wasn't really aware, I wasn't overly familiar with what was going to happen you know. I knew I had to give birth to the baby, but, you know, wasn't overly familiar with how it would happen I have to be honest with you. 

So I was given a pill, and that was extremely hard to swallow. I was informed categorically by the hospital, that the pill was only to prepare my body for the birth and that it wouldn't harm the baby because I was absolutely paranoid about 'was this pill going to kill the baby, why was I taking this pill'? But eventually I took it, which is quite hard to do. And then we came home for 2 days which is what you have to do. And again, 2 days of you know - well you know the outcome so that was very difficult. I can't really remember what we did to be honest with you. 

What did you take 'preparing your body for labour' to mean?

To release hormones so that the cervix would open and the muscles would relax and the baby would be able to come out. 

We were told that the baby may be born alive, and that if the baby was born alive there would be no attempts made to resuscitate the baby. We would be able to hold the baby immediately - so we were told that - but that's what I took it to mean. My main concern was that the pill didn't actually hurt [the baby], it didn't kill him. I didn't want that. I hadn't thought about the death of the baby at all. I hadn't thought how that would happen. 

And I think that a lot of more focus needs to be put on, I would have liked, actually... a lot more focus would have... there's a huge focus on your well-being, tremendous focus on your well-being as a woman, and your health, which of course is terribly important, and that was one of my, one of my husband's major concerns throughout the whole thing was my well-being over and above the baby's. And the hospital very much focuses on this, and it's very much how your well being is looked after, and very little, actually, to do with baby. It's sort of a foregone conclusion, 'well the baby... pretty much know the result anyway, you know, let's concentrated on you'. 

 

She was promised support during labour and delivery but felt that she did not receive it.

She was promised support during labour and delivery but felt that she did not receive it.

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So I was told to just take the pills, read the paper and the bereavement midwife kept coming in occasionally to check. And apart from that I wasn't really sure what would happen. And then at about, after about 5 hours of reading the newspapers and having various pills I began to feel some pain, and I wasn't really sure what the pain was - it sounds ridiculous that we were going in to have a baby and having pain and not really knowing what it was - but I had absolutely no idea. 

It was only when my husband said, “You're having, those are contractions,” because he's actually been there before that he... I suddenly thought, oh, and he said, “I'm timing them and they're happening every 12 minutes.” And he'd been doing that for sort of half an hour. I had absolutely no idea that that was happening. So we mentioned this to the midwife and then they became extremely painful. And I was told that, I was told before having the baby that I would be able to have an epi-, have painkillers, and that they advised me quite strongly, knowing the outcome of the pregnancy, to take any painkillers that I could, and not to try and tough it with a natural childbirth. Because their experience is that, in giving birth in these circumstances, the pain is much more acute than it ordinarily would be if it was a normal pregnancy with a happy outcome.  

So I was strongly advised to take all of the medication, certainly gas and air and morphine. The pain got so bad I actually moved on to an epidural, which they were extremely reluctant to give me funnily enough, I don't know why. The anaesthetist was not overly keen to give me an epidural. I think the reason he wasn't keen to give me an epidural was one, that they take an awfully long time to administer, and secondly, they are quite expensive, I think. And thirdly, we knew what the outcome was and it was a small baby, and so therefore the pain can't have been too enormous. 

However, my husband managed to convince him that he would be well advised to give me an epidural, so he did eventually give me an epidural. And again, I had little, no, I had no knowledge really of what an epidural was, or how it would affect me, terribly until it, until it was prescribed to me. 

I was then left alone, again, for various number of hours. I was informed by the, my husband explained that I was having contractions and we were told that, actually, well... I hadn't really terribly dilated so it couldn't really be happening. I got the feeling that a lot of their... they very much felt that a lot of my pain was actually emotional rather than physical. That's how, and I felt that they were treating me based upon that. And that, you know, it was far too early to be having that sort of pain, with your cervix not dilated, and really an epidural wasn't necessary for a baby of that size. And we very much, I very much felt that at the time. 

And so my expectations of, well, I had no expectations. There was no management of my expectations or my husband's at all before the birth. I didn't really know what to expect other than I'd give birth and I'd have a lot of support on the day to do it. And I was informed when making the decision that there would be a lot of support - continual support - on the day, and that we were made as comfortable and as lovely as possibly could happen. And that was not what happened at all - totally the reverse actually. Because on the day of the birth we were -  everybody around us was nobody that we'd ever met before.  

The doctor that we originally saw, the registrar we saw first thing in the morning because she happened to be going off duty, but nobody else was familiar to us at all. And the midwife we actually had was an agency midwife anyway, and so it was a case of, you know, ‘Let’s keep the good midwives for the good outcome’ - that’s how I felt at the time. And then you do question your decision I have to say.

 

She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement...

She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement...

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I think in fairness to the, to the agency midwives there who are only, who, sort of, they're only there 9 to 7 so when they go off duty you then get a night nurse, or whomever, and in fairness to them, they did say that I could see the baby when I wanted to. But I forgot about that. I was, I completely forgot about it - didn't even think about it at all afterwards - and it was only a day after being at home when it suddenly occurred to me, 'Oh, my God I could have seen [the baby]- for most of the night I could have, you know, I should have done. My God, you know, where's my maternal instinct? Why didn't I have, why didn't it occur? Why didn't it occur to me to want to see and hold my baby again?'. You know, and I felt racked with guilt about that. 

But I contacted the bereavement midwife at the hospital and was, and she said, “Well, that's not a problem [name]. You come in and you, you can see him now he's still here.” I was told where he would go. We were asked whether we'd like photographs of him, and we said yes we did, which they took. They had to actually re-do them, unfortunately because the ones that the agency nurse took were just, [sighs]… just... I mean, I didn't, we didn't get to see them because they had to re-take them, they were just very... you know there were no clothes on the baby, there was nothing. We didn't get to see those but if, you know, again that was quite distressing. 

But we were told that we could see him whenever we wanted to. And he was taken down to the mortuary and we were shown where the mortuary was. And we were told the names of the people that would be looking after him and... because it was quite, very important to me that, to know exactly what was going to be happening with him. I guess that's the maternal instinct. And they were, they were very good at that. 

So we did go back and see him again which gave me a chance to say goodbye properly, because I hadn't felt that I'd had the chance at the birth to really say goodbye properly, so I wanted to do that. 

And did you feel better, once you'd seen him? Do you feel a bit better, was it any solace?

Yes it was, absolutely definitely. I don't, I think it would have been much harder for me to come to terms with the loss of [baby] had I not had a chance to say goodbye to him properly, and see him again, so that I can picture his face. And he was less bruised when I saw him 3 days after the birth - he was less bruised - he looked much more peaceful. Whereas immediately after the birth he was very... he was quite dark, which again they didn't inform you of. They don't tell you that at all and it's huge, huge shock, huge shock that you're expecting a little sort of pink baby to come out, and that doesn't always happen when they're so little. Their bodies aren't prepared to go down the birth canal, and they get terribly, terribly bruised, bruised to the extent that they look sort of... terribly, almost black in parts. 

And you're not, and I mean you're not informed that that's what to expect. It's quite a shock. And again, as a mother you live with the guilt that, oh, you know the first sight of your baby was a shock, and you think, 'Well, that shouldn't be like that'. You shouldn't feel like that, and that's wrong to feel like that... and I felt, again quite guilty that that was how I felt. 

So I do wish that they had emphasised the-, you know told us more about what to expect. So when we went back to see him 3 days afterwards he was pink and his nose was pink and he was more, he was how I'd imagined he would be born. 

 

Describes feeling angry to be asked why she hadn't attended an antenatal appointment after having...

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I hooked into the support service at the hospital, I was very focused on the hospital, tremendously focused on the hospital - for me it was terribly important. I think that's because that's the only place that [baby] had ever been. And, and so I was focused on that, and the GP I wasn't interested in, because they didn't really help me throughout the pregnancy, or done terribly much to, you know, make me feel overly confident.  

The midwives, I received a letter after terminating, was it after we'd terminated... after we'd terminated the pregnancy, I was due to have an ante-natal check-up with the community midwives at the surgery. Of course there was no point in me attending because I was no longer pregnant, so I phoned them to notify them. And I think it was about half an hour before the appointment because I suddenly remembered, and I then got a letter two days later saying, “Why didn't you turn up for your appointment?” So I was so, you know, incensed by it, well my husband was, [that] we wrote to them. 

 

She found it difficult to accept that the post mortem found no reason why her membranes had...

She found it difficult to accept that the post mortem found no reason why her membranes had...

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The post-mortem revealed nothing. It revealed, it revealed nothing negative. It revealed everything positive, which at that stage, it makes it even harder. It's very hard to again, it's easier to live with the decision if you can find at an outcome and a reason for it. 

We were informed, before making the decision, that there was every likelihood that we'd never find a reason for the necessity to terminate the pregnancy. We were informed of that, and we were told several times that that may be the case and actually in our outcome it was the case. And that's the hardest, hardest solution to deal with, because you never know why, and you're always looking for an answer. 

The outcome of the post-mortem was that [the baby] was absolutely fine. He had developed mentally, he was in the higher quartile of his development. He was big for his size, all of his other organs were absolutely perfectly developed. His lungs were developed to the correct gestation of when we discovered there was a problem. There was nothing physically wrong with [the baby] at all.  

With regards to the placenta, again the placenta was absolutely fine. They didn't find anything wrong with the placenta either. So after the post-mortem everything, there's still no knowledge as to why it happened. They're still not even completely sure whether it was premature rupture of the membranes. They only think it was premature of the membranes because I sat up in bed one night.

The, the only reason I think that the, I mean the initial thought when you lose amniotic fluid is that it is premature rupture of the membranes, it was never confirmed with us that that was actually what had happened, even after the post-mortem, that was what had actually occurred. There was nothing, nothing in the post-mortem results to back that up, other than when they scanned me there was no fluid round the baby. 

That's quite difficult isn't it?

It's very, very difficult afterwards to live with the decision you've made and you don't actually have a reason for what's happened. Very, very difficult. 

Do you wish you hadn't had the post-mortem?

No, I'm, I think it was the right thing to do for everybody. I think we had, I think we made the decision to terminate the pregnancy and we've done that for reasons that I've already mentioned, and I think also, part of that, part of our responsibility was to have a post-mortem so that we didn't go into another pregnancy and have the same happen again. But again, that's not fair on the, on the newborn child. So we felt quite strongly, again, for that reason, that the post-mortem was necessary.

 

'I wouldn't have been able to go through that experience without my husband's support and his...

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'I wouldn't have been able to go through that experience without my husband's support and his...

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I could hear that it was a problem now, but I couldn't understand whether the amniotic fluid was produced by the baby, or was produced by myself and whether there was any chance of the amniotic fluid increasing, and what, whether it was a leak or, you know, that, I couldn't get my head around any of that. 

It took a lot of work on my husband's part - because he knows how I am and he knows how I work - to ask her questions in a way that I would understand. And a lot of repetitiveness was required for me. 

And I, even at the end of speaking to the registrar doctor, I still didn't have a terribly clear understanding. And it was when, and the obstetrician came in, the obstetrician consultant came in and, again, I didn't really hear what she was saying. And I can remember specifically coming home and saying to my husband, 'What's the effect of the baby having no fluid around him?' And my husband having to explain it to me at least 3 times then. 

And I wasn't sort of - I was listening but I wasn't really hearing the detail of what I was being told - and it was... had my husband not been there, then it would have been, I just don't know I'd have done. And I wouldn't have been able to go through that experience without having my husband's support and his clarity of thought. And being him, being able to ask the right questions, I had no idea what questions to ask, I had no idea even what I wanted to ask. But he did and that was a tremendously helpful. 

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