Interview 05

Age at interview: 40

Brief Outline: Her 2nd pregnancy' 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy' nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents are carriers of recessive gene. 4th child born in 2004.

Background: Pregnancies ended in 2002 and 2003. No of children' 2 + [2]. Ages of other children at interview' 3, 6 months. Occupations' Mother - NHS manger, Father - company director. Marital status' married. Ethnic background' White British.

She wondered with hindsight whether the consultants had given her an entirely balanced...

So, when I heard that the condition was 'incompatible with life' I assumed that the baby would either die and I would miscarry, or it would be stillborn or die within the first minutes, moments of life. 

And in hindsight, that wasn't particularly factual information to have given me at that time, because knowing what I know now about the condition they thought that was, which was a very severe neural tube defect those babies can survive - typically with a very low and poor quality of life and typically not for very long - but they can survive, and you can even operate, although again, not particularly successfully. But there are other options than the options that were presented to me at that moment in time. 

And I think, having reflected on that and discussed it with the consultant who I'd got to know quite well over the next 2 years, I believe that he imposed some of his personal views on whether or not you should proceed with the pregnancies where the baby is severely handicapped, and that's an issue. 

But I do believe that, that for both of them, that both the consultants, because they were both very much in tandem with their viewpoint, that that was a personal view that a baby with that severity of illness shouldn't, shouldn't be born. 

And I kind of very much went with that. And the reason why that is not a huge conflict is because I would have got there myself as well, and I was comfortable with where I went with that decision, but at the time it wasn't entirely, it wasn't a balanced presentation. And if I'd have, in hindsight, felt that I should have continued that pregnancy there'd have been a lot of anger about that because I wasn't presented with a, with that balanced view at that time. 

But do you think they should have said?

I think that the things that were very clear from the scan was that the baby would have had a very poor quality of life if it had survived, and I think it would have been very fair to talk about about 'if', because a lot of babies with such a large encephalocoele don't survive but some do and some go on to survive for many months and have some life. And I think they needed to be, to be clear about that option, but to be honest about the fact that that was quite small, a small chance. And that wasn't, wasn't presented to us at all. 
 

She used a medical website to find out more about Walker-Warburg syndrome which made her feel...

There are 3 syndromes but the most common one and the one that effects people of my racial background, is this thing called Walker-Warburg syndrome which is also recessive, so it gave us a 1 in 4 chance of the baby being affected. 

The letter didn't say all that. The letter just said that a condition which may affect the risk of a future baby being affected in the same way, didn't say what the risk was. 

And so I then spent a day not being able to get hold of the author of the letter because she was off at conference or something. And then finally spoke to a fantastic nurse, genetic counselling nurse who was very well briefed by her boss on everything, and so knew all about me, which was great. When I got hold of her she knew who I was, she knew about the baby and was able to tell me everything she knew about this, what is an extremely rare condition - she hadn't ever met anybody with it before  and in fact the consultants looking after me hadn't ever looked after anybody with it before - but it was reasonably well documented.  

And so they told me about it and I'm not even sure I knew I was pregnant then, I might have just found out and they said, 'Come in and talk to us about it.' I arranged to do that the next week and in the interim I'd searched Medline and the net and everything about this condition and went there like, you know I was like an expert. The geneticist was like, 'Oh, did you? Tell me more, oh, really, does it?' And then she'd found a couple of articles herself on the web but not as much I [had], you know, I'd spent a week doing nothing other than find out about this condition.  

Feels sad that she found herself in a position of having to make such a difficult decision but...

Yeah, I think it's for me, if I did this 100 times, this decision again I wouldn't change my decision. I don't have, knowing what I now know about the condition that the babies had and etc, etc, I don't have any dissonance about ending a pregnancy. I have a great sadness that I needed to face that decision and go through what we went through, but I never for a moment think either of the babies should have been born and been allowed to wither or survive for moments or days or whatever. 

What I, I think I feel uncomfortable with is people not understanding it fully enough, and drawing their own conclusions about why we did it. And perhaps them in some how viewing it as, you know, the kind of designer baby stuff, you know, that them viewing that in somehow this baby was mildly imperfect and that we ended it's life. Because in a sentence you can't get across, you know, why we did it and why we believe it was the right thing for us to do. 

And so I think that's why I sometimes feel uncomfortable about saying 'termination' because I know they won't really understand, you know, the difficult decision we took when we made that, you know, albeit quick decision, you know, the difficulty and how ill the babies were and all that kind of stuff. 

She found the word 'feticide' very difficult to accept and preferred to say 'putting the baby to...

It was quite late in gestation by then, that baby was 24 weeks so I can remember the first time I felt really upset by the whole experience was when she talked about something she called 'feticide', which I found and still find really unhelpful language. 

And I knew what they meant, because you know I'd heard of you know, 'infanticide' and I knew 'fetus' but I still find that very difficult language. I sort of, for me it had almost a criminal - I don't know - phraseology about it. But she kept using that word, and afterwards I did talk to her about that word and said I'd found it quite difficult. And she was very matter of fact in describing the process of injecting potassium chloride into the baby's heart, and I felt that was all very sort of frank and florid language that I really didn't need to hear at that point. 

And it would have and I can remember paraphrasing back to her, [using] 'putting the baby to sleep' which was the language that I felt more comfortable with, but nevertheless she stuck with it and the leaflet used that kind of language. But I did find that probably the most difficult part of talking through termination. 
 

She found the birth was less demanding physically than she had expected.

I was talking about the labour, about my anxieties, about going through the actual birth which consumed a lot of my thinking for the, for the couple of days while we were waiting to go through it and, because I'd had quite a difficult labour with my son, quite lengthy and painful labour, so I was quite anxious about that. But in hindsight, that was just a moment in time. 

The birth itself for me was not a difficult experience. It was relatively quick and relatively painless compared to the real thing, which I hadn't understood to be the case but I felt from the midwife and others I was expecting it to be more like a full-blown labour but it wasn't at all. It was a, it was a sort of mini labour and it was quite easy from a physical point of view.  

She chose to take morphine not realising that her baby was about to be born and she regretted it...

But I think that was the only moment that was right, that would have been right because as soon as the emotions were, interestingly, I'd had morphine just about 5 minutes before she was born, the midwife had come in and said, 'How are you coping?' And had I known I was near I would have said, 'I'm coping fine,' but I thought it was more, going to be more like a typical labour and I thought I'd got 6 hours to go and I said, 'Well, I can't do this for, you know, 6 hours, give me the drugs.' So I'd had some morphine and then she was born 5 minutes later and then I was dreadfully sick, felt wretched with the morphine, it made me feel awful, awful. I was a bit cross 'cos I hadn't really needed it, not cross at anything or anybody, I was just a bit cross because I, for the next couple of hours I was really out of it and I was vomiting and I felt sleepy and it was all a bit weird. 

Explains how when she ended her first pregnancy she decided not to see or hold the baby.

So I've talked about deciding the approach that we wanted to take with the birth, and we both felt quite strongly about that... I was, wanted to deliver in a way that I was least likely to see the baby, that was my other anxiety. It was not seeing the baby and I talked to midwife quite a bit about how, what was the best way of doing it so that I didn't end up inadvertently seeing the baby, I was quite sure that I didn't want to do that.  

I think, having gone through it again since and seeing and held the baby and all the rest of it, I think what I was trying to avoid was fronting up to what was happening. I think I just wanted this to be minimal impact, and I thought if I didn't know the sex of the baby, I didn't see it, that it would be less of a baby somehow and it would be more of a miscarriage. And I can remember that was very much the language that I used at the time - 'miscarriage' - and that's all I talked about to people, that I was had a miscarriage.  

And I think, technically, it is a miscarriage pre-24 weeks and so we were technically just, just under 24 weeks so that suited me as well. And I, and that's what I was running with, was the idea that the less we made of it, the less of a thing it would be in our lives for the long term.  

In fact that completely was the opposite way, as it's transpired. But that's what I was thinking at the time. And I had been counselled that that wasn't, wasn't the norm, and that wasn't their experience but I felt I knew best so I went on with that track. 

But interestingly, when the baby was born, just for the instant when, when she was born, I wanted to see her. Really, and I wasn't afraid at all. I think I'd thought I would be afraid of seeing this tiny, tiny thing and but the minute she was born my instant reaction was that I wanted to see her. But I let my rational thinking come to the fore and, and my husband, I said to my husband that I'd like to see her, and he said, 'No, you don't, we don't, remember we don't.' And I thought, 'No we don't, you're right, we don't.'

And the midwife said, 'Well you don't need to decide now, I'll take her away,' - well 'it' away, as it was then, 'And you can, you know, decide. You've got, you know, hours, you've got days if you want. You don't need to decide that right now.' 

Describes seeing her second baby and how even though the baby didn't look as she hoped, the...

And the baby was, and it was, again, a fairly simple birth and the baby was born but she was delivered in the sac, in the amniotic sac, was all complete, so it wasn't the midwife said, 'It's probably best not to see her this way, let me take her away and burst the sac and I'll bring her back.' 

And they brought her back and I was more excited that I was anything else, excited. I would parallel it with seeing my live children when they were born, I was just excited to see her. I didn't know if she was a boy or a girl so I was excited to know what sex the baby was and to see it, I wasn't really afraid, but when she came into the room carrying a Moses basket which was like tiny, this tiny thing and, I was a bit taken aback by the tinyness of the basket which then made me think, God, you know. Then I got a bit, a bit scared of seeing the baby, and then went under the duvet, and said to the midwife, 'Describe what you see.' 

So she described what she was seeing and likened it's size to, it's not Tiny Tears, it's more sort of Cindy doll size and then [husband] said, 'I'll see it first,' so he saw it and then I said to [husband], 'What do you think, can I cope with seeing it?' He said, 'I think you're going to be a bit shocked, actually, I'm not sure you can see it.' And I was like, no way, you've seen it, I'm seeing it and I was really sure about that. 

But he said, 'Well, I think you're going to be a bit shocked, it doesn't look as baby-like as I thought,' and he said, 'It looks all purple and brown, sort of very dark and sort of very perfect but not very fleshy and just looked a bit skeletony,' and all this. 

So I think it helped to hear that. So that when I did look I was a bit shocked myself that it didn't look at baby-like as I thought, and it didn't look pink and fleshy and sort of fluffy, it looked pretty horrible really I thought, I don't think it looked nice even, because their eyes are fused and just tiny, tiny skinny limbs and things, and all a bit out of proportion, the head sort of big. So it wasn't like holding a stillborn baby, you know, I've seen, through my nursing I've seen stillborn babies, they just look like tiny, asleep babies, so it didn't look like that. It didn't look very, very nice, if I'm honest. But I've never regretted doing that, it was definitely the right thing to do.

She had chosen not to see her baby but knowing that a photo had been taken she became quite...

And we were given some photographs and footprints and handprints. Well no, they told us that they'd taken photographs and footprints and handprints, and it was up to us whether we wanted to take them away or not, but that they would be retained on our file should we want to. And we decided that we would take them away with us but that we didn't, but we wouldn't look, we didn't look at them, we wouldn't look at them. 

So I then instructed my husband to put them somewhere but not somewhere that I knew because then I thought that I'd start peeking at them without him there. I think he might have suggested, even, I think he suggested that I agreed that it was a good idea that he would put them somewhere, but not somewhere that I knew, so that if I wanted to look at them, I'd have to do it in a controlled way. So I'd have to ask him he'd have to come with me and tell me. 

So they were hidden away somewhere in the house and then I became fixated of where they were, and spent ages looking for, you know, spent, regularly each day I would think I wonder if he put them there, I wonder if he's put them there. I don't think my husband knew I was doing this even. 

And anyway several months down the line, probably 2 months down the line, the day came when I decided that I was going to look at them next Monday and would he look at them with me and he said he would. And so we kind of pinned this day in the future, so it was about 3 days away, when we would look at the pictures and I can remember talking to my best friend about it at length and her saying, 'Do you want me to look at them with you?' And I said, 'No, it's a private thing, we'll do it together but we'll look at the picture.'  

And then all sorts of things, and the day came and all sorts of things spilled out then, that I'd named the baby which my husband would never get, again into the whole thing but I'd given her a name. And then he was quite cross that I'd named her and it wasn't his name and we'd never discussed it and, but anyway, she became [name], which was the name that I'd given her and he then was quite okay with that. And I asked him to look at them first and he looked at them and said, 'No, you won't want to see them. They don't look nice.' 

And as it turned out, they weren't very good pictures, the quality of the pictures was extremely poor and very distant and quite macabre. They weren't at all pleasant which, again, made me think I should have seen the baby because these pictures just didn't capture her in any shape or form. And I remember... and he stood a long way away at first, and held it up and I got closer and closer, I don't know why we just didn't... but the whole thing that we went through and I finally got really close up to it and then I just didn't think anything, I just thought it was awful. But they weren't, they didn't really look like a baby, almost so I wasn't really upset with them I was more upset that they didn't look like a baby. 

She approached her baby's post mortem in a very practical way because she wanted to be certain...

And again, this might be difficult for people to hear but you know, the bits of the baby going in different directions to look at all these different things that this Walker Warburg syndrome constitutes, because they couldn't look at all in the hospital where this baby was being born, so bits were going to be sent to Holland and London and all sorts of things, so  

But you know, again, I just kind of marshalled that like a military campaign, making sure, 'Now let me read the forms, have you got'?' You know, I can remember sort of saying, the midwife being - finding it all a bit difficult - because I was saying, 'Now the eyes have got to go here, and the brain's got to go here,' you know, and saying, 'They've got to get a muscle biopsy within an hour of the birth, do they know this?' 

And, you know, so it kind of, strange as, at a level I was much more in the moment with this is a real baby, let me see it, let me name it, but on the other hand I was also being incredibly clinical about getting everything sorted with the post-mortem.  

But my husband was the same, we again, throughout this whole two years what's been helpful for us is that we've always seemed to have been in the same place at the same time, which I think helps. I think it would have been harder if we weren't, I think, and we were strong at the same times and we broke down at the same times and, which some people might find that harder because you can't be there for each other because you're both blubbing at the same time or you're both sort of marshalling the troops at the same time. But that's just how it played out for us and it seemed to be okay. 

Why did you kind of get [so] involved with the post-mortem? And why, I mean most parents don't and it's left to the hospital? 

I know, I think because you know, I knew more about this than anybody else in the hospital, and nobody really knew about this condition and knew about all these different things. And I was just, my biggest worry was that we'd lose a second baby and still not know why, because this whole diagnosis seemed to be back up in the air again. And my biggest concern was, was knowing that it was, what it was, it was all about the future. Was it 1 in 4 or was an inevitability; every pregnancy would have this? So I just needed to know and I just felt I couldn't, that everybody else was incompetent around me really. 

And there were various things, when I was waiting to go in the second time they cancelled me twice, once because there were no beds and twice because they hadn't put my name in the book. And then, on the day, there weren't any beds again because I hadn't had my name in the book. And so I had a few concrete reasons to believe that the world was incompetent [laughs].

I don't know, maybe it's just me, I'm a bit bossy and a bit of an organiser, I just sort of, and maybe again, a bit of the inner me, perhaps that's what I needed to do to cope with it, was to get practical. 

She was determined to have more children and was very pleased when she became pregnant.

So you know, I got the machine rolling, because you know - I will get pregnant - it was like a military campaign in the household to get pregnant. I bought these pee-on, pee-on sticks, ovulation sticks, it was like, 'I'm not going to miss D-Day, it's going to happen this month'. And my husband's saying, 'Just calm down, calm down. It might not happen.' And I'd actually read in this book that a lot of people, or some people, not uncommonly, get a kind of sub-fertility because their anxiety levels and everything are so great that they get quite, fixated about it. 

So anyway, the campaign commenced and I got pregnant that month which was great. And I'd been taking my high dose of folic acid which gave me a risk rating of 1 in 100 for another baby with neural tube defect, which was what we thought at this stage the baby had had. And I just was, you know, my cup was half full, it was 99 chances out of 100 that the baby would be fine and I didn't really believe anything other than it would be fine.