Interview 33

Age at interview: 33

Brief Outline: Mother who has epilepsy, cared for during her first pregnancy by a Special Pregnancy Unit. Developed pre-eclampsia and had induction with epidural at 37 weeks.

Background: Children' 1, aged 15 months at time of interview. Occupations' Mother- full-time mother, Father- solicitor. Marital status' married. Ethnic background' White British.

Because she has epilepsy she talked to her neurologist and a genetics counsellor before trying...

I knew, we knew we wanted a family quite quickly after we got married, so but we knew that the epilepsy was a big issue within that so our first port of call was my neurologist, and we went to see him and discussed the options with him and the possible problems he thought we might have. Probably over quite a long period of time, even before I was married, he was working towards getting me on one drug, with the knowledge that I would want children eventually. So we'd managed that and we went and discussed, you know, getting pregnant. The implications, as in, if I had terrible morning sickness, what that might mean with my drugs, and that I would have - you know obviously the current thinking is that you should very much keep taking them. That you do more damage to the baby by having a seizure than you would sorry - you do more - yes, you do more damage to the baby by having a seizure, because you're not on drugs, than you do by taking the drugs, which the risks, although higher, are still you know, greatly, very low. So we saw him first. He was very positive, suggested a few tips, you know' go to my GP first, see if I could go to some sort of counselling at the local hospital. Which is what we did, and we were sent to somebody who is actually a genetics counsellor at the local hospital and she basically talked us through the implications that having epilepsy might give to the pregnancy. Things that, you know, the higher incidence of spina bifida, that all of that would be screened for you know, cardiac problems. And she went, ran through when each one would be screened for throughout my pregnancy. And probably discussed with us long before we were pregnant, you know, what did that mean? If you found out you had a spina bifida baby, think about what you would do about that. So off we went and got pregnant very quickly and were back there within six weeks [laughs].
 

She was surprised the GP did not do another pregnancy test and told her to come back at 10 weeks.

We went to the GP. I went to the GP. I was quite surprised that they're not really very interested when you tell them you're pregnant. They believe you. They believe the Boots and Sainsbury's tests that you do, and you just sort of walk down the street and buy a load more to convince yourself.

I mean, what more would you have liked in those first few weeks?

He was very nice. You know, he said, "Congratulations, but until you're actually, until you're ten weeks pregnant, we don't really need to know.' I suppose once they've said it all it makes sense, because there are people have miscarriages and whatever, and until you've had a baby you have no reason to be in contact with that, so you don't know the protocol. So I don't think I would have wanted more. I mean he was perfectly pleasant, in the, you know, 'Well done. I hope it was planned' you know, he checked that, which was quite ironic. But I suppose they're not all planned.

Yoga classes were useful for meeting people. She felt embarrassed in NCT classes to be the only...

We were, we'd only been in [city] a year, basically, when we were sort of at that stage of, of classes, so I was very keen to do as much as I could, to meet people, because if I didn't meet them now I was going to be stuck at home with a baby. So I did pre-natal yoga, a class specially run for pregnant ladies from twenty weeks, and met a lot of people through that. It was great. It was an hour and a half to yourself and your baby, as they constantly reminded you. "Feel your baby.' An hour and a half a week, and because you did it from twenty weeks you got to know people much better. You had a longer period of time with them. And we also did NCT classes, but because of the problems that came later, and me going into hospital at thirtysix weeks we missed four of them.

So we only did a couple of weeks. And again, that was very much to meet people. I wasn't so down the green route of having a water birth and all of that. I, I felt a bit embarrassed when I went to the first class and they asked you what your, you know, what you thought you might like at birth and everyone's saying a water birth and a home birth, and I said, 'I'd like an epidural.' And they looked at me like, "What are you doing here?" [laughs] So. And we went on the hospital tour, but we didn't go to - because we were doing NCT we didn't go to the classes at the hospital, but actually as it turned out we probably should have done. Because they would have been over earlier, and we'd have learnt more before the big day.

So you missed like all the classes about breathing and birth positions and stuff? Did you get any of that in the yoga class?

Yes, we did. We got breathing in the yoga classes, and that was, you know, of great use.

Because hunger triggers her epilepsy, it was important that she should not get too sick. Her...

And what about the sickness? Was that a problem for you in the end?

Morning sickness?

Yeah.

No. He did - when we went to see the neurologist, he did warn - he did say - that the drug I take has quite a good, some of the things in it are good for - well, some of its ingredients are the sort of things you use to stop sickness, so actually it worked a dream. It was great. I didn't feel sick once.

Had they talked to you about what would happen if you did - I mean because it would affect the drug levels - are there alternatives like pessaries or intravenous drugs?

I would have probably had to go in. Another thing he was worried about was whether I didn't feel like eating, because I was, felt so sick, and my epilepsy is very triggered by lack of food, and I, so what I would have had to do was go into hospital and have IV fluids, food, whatever, and drugs, in the hope that I got over it and could go back to normal. But as it happened - best laid plans.

Being uncomfortable in bed made it difficult to sleep. She would just do something else till she...

What about aches and pains? Did you have, suffer with back or'?

I had a bit of backache, but nothing, just uncomfortable, and uncomfortable in bed. That was the biggest thing, and I became a bit of an insomniac, loving my sleep as I do. I would be surfing the internet between two and three in the morning and ringing my sister in New York. And she thought it was great. She never got to talk to anyone after her kids had gone to bed, normally. But now she was having endless phone calls [laughs].

Did you find anything that helped with the sleep?

I would get into the - our nursery, which was starting to evolve, had a bed in it. So I would get into bed with a cup of hot, you know, a glass of hot milk, and read. And I would nod - I'd wake up in the morning with the book propped up on my face or whatever. So I got through quite a lot of books. So I found that I, it was good to be active for sort of fifteen, twenty minutes, making the milk, surfing the internet, what have you, and then start reading, and I'd nod off again. But I guess it's all just getting you ready, really.

When pre-eclampsia was diagnosed at 36 weeks, she was kept in hospital for a week and monitored...

They monitored my urine as normal, and it was worryingly high. And I saw the registrar and she said, "I'm not sure, I think you need to come in tomorrow and we need to look at this again.' And she said, "But I'll put you, you know, if you wait another half an hour you'll see Professor who runs the unit.' And I saw him, and he said, "You're not going home. You know, this is too high.' The risks - my blood pressure was actually fine, but the pre-eclampsia - what they thought was pre-eclampsia starting was in the, was the protein in my urine, which had reached four, which is apparently incredibly high. All these things you discover. And he said, "I want you to go home and be back by 3.30 to book - you know, to - and you're not going anywhere, and we'll see how you are when we deliver the baby.' So gone were all thoughts of how I'm going to have this baby. I was sort of, "Oh my God, the nursery's not ready. I haven't bought the sheets and" you know. So I go home and teach my husband how to work the washing machine.

Was he with you?

Yes. Which was actually not - because we went so often, and he works, you know, a reasonable distance away, he was with me because we thought we were going to go and see an anaesthetist and things, whereas a lot of them I'd been to on my own, or my mum had taken me to a couple, and you know. So that was a fluke, really. And we went out and had a nice lunch, came home, packed, and in I went and cried my eyes out. But the reason they were worried about the pre-eclampsia - I missed that bit - was because pre-eclampsia can trigger seizures. And that is the, that is what happens, if it gets very, very bad. And with my tendency to seizures anyway, they were worried about the two, which was why the professor said, "You're staying in", and the registrar had thought we might think about it for a while. And, and so I arrive, and they can't put you in a room on your own, which a lot of the, you know, people on this special floor were in, because I might have a seizure. So you can never be on your own, so you have to be in a ward with four of you. So, which, you know, is fine, but I was distraught, just beside myself. And it was horrible in there, just ghastly. And it was sweltering, absolutely sweltering. And we were - the one godsend was that the hospital has beautiful gardens, and every night my husband came with dinner. So he'd go to work, come home, cook dinner, put it in the car and bring it up, and we'd have a picnic every night. So they monitored me every day. 

You had to do a twenty-four hour urine collection, which really sorts out how bad your protein levels are. And I'd have my blood pressure taken about twice a day, I think it was. And your weight. And all of that was being monitored. And my blood pressure would go up and down a bit, but never - there were girls in there with me whose blood pressure was well over a hundred, and they were on, you know, drugs for it which were, made you very strange and made you feel very unwell. So I felt absolutely fine. Which is the sort of worrying thing about it, really, because I'd have friends coming in and, you know, having, tea in the garden, and, you know, and I had to keep having to say to myself, " Oh, I ought to be having a little rest.' And I'm just getting bigger; huge. My legs, my arms, my face.

I'm just blowing up in this heat, with all of this water retention, and I'm looking like - my husband said that I could have made an umbrella stand out of my legs, like umbrella stands of elephants. So, and every day you would go and have the baby monitored for half an hour and checked that it was all right. And really, I'd gone in at thirty six weeks, and they wanted to get me to thirty seven, because that's the time that they feel that the baby is, is ready

She worried about the risks to the baby from taking epilepsy medication. It helped talking to...

Does the British Epilepsy Association provide good information on pregnancy?

Yes, and I had, before I got pregnant, I had all their epilepsy and pregnancy leaflet. They also, there's a chap called Betts at the University of Birmingham, who's written a lot about women with epilepsy getting pregnant, and the implications of that, and I read a couple of his papers. Which, they were both - I got one, I think, through Epilepsy Action, and one also through the Royal College of Midwifery in Wales, which I had picked up in some article, that they produced a, a paper on epilepsy in pregnancy, so I read those and things. And part of them is very reassuring, but also part of them is, scares the living daylights out of you. You know, because the statistics have to come from somewhere, and so you are slightly nervous. I had one girl in the epilepsy magazine, from Epilepsy Action, about nine months before I, we got pregnant. There was a girl - there's a sort of pen-pal thing - and she said she wanted to meet up with anyone taking Tegretol Retard, who was planning a family - who had had a, was pregnant. And I wrote to her and said, 'I take Tegretol Retard, and I'm planning on getting pregnant, so I'd be very interested in it if anyone comes back to you.'

And she wrote to me and it turned out that the ad had gone in very late, and she'd actually already had the baby, and - but she'd also lived in the same town I live in. And so she could tell me all about it. And so that was almost better - it was almost easier to not meet somebody but have a whole load of tips, and she talked about all the sorts of things she'd eaten beforehand to help her fertility, and nuts and grains. And a book that she recommended, the Food Bible, which I got. And I mean, whether that's epilepsy related, probably not so much. But it was nice to, you know, hear from somebody.

Apart from one seizure in early pregnancy, her epilepsy is now better than it has ever been.

We hit a problem at nine weeks when I had a seizure, on my own, at home, on the phone to my husband, who was two hundred miles away. So, no-one knew I was pregnant, other than - in fact, no, nobody - just the two of us. And the idea was that we wouldn't tell them, because we wanted to get through some of the screening before we found out I was pregnant. So my husband convinces our - one of our neighbours - well, finally gets hold of one of our neighbours' telephone numbers from directory enquiries and persuades the neighbour - well, didn't have to persuade - but told the neighbour to go into the house, as he had keys. So he did that, and my parents are forty-five minutes away. So they set off in the car.

The neighbour came in, and I was fine, but [husband] had actually - or my husband had actually thought I was cooking because there was this terrible clattering of plates and what have you, and actually I was just sitting on the sofa, and I fell on my supper plate, which I'd finished. But - so that meant we actually had to tell everybody, because my husband was with his mother and was going stir crazy, but couldn't get in the car and drive; it wouldn't have been much use. And my parents were trying to force God knows what down my throat - all these drugs - so we had to come out, as it were, then, which was a bit of a shame, and I didn't want the pregnancy to feel like for ever, and when people know at eight weeks, it sort of drags on a bit. But, so my drugs were upped at that point, my epilepsy drugs, because what they concluded was that because there's so much more blood in your body, when you're pregnant, that the drugs had been diluted. Therefore they weren't working.

Right. Had you rung him because you thought you might be getting a seizure, or was it complete chance?

I have them totally out of the blue -

Right.

And we were literally - he'd phoned me to say he'd arrived at his mother's after, you know, three hours on the M25, and and I just happened to have it while I was on the phone to him.

So, it was quite unusual for you to have one, was it?

No, not at all. I actually had been, I've been more well since I've been pregnant and a mother than I've ever been, which is very bizarre. So it obviously suits me down to the ground. But when I had a career, and at university - well, I actually had to give up work because they got so bad, just before we got married. So about a year before I had the baby, well, the year before I got pregnant.

Is that a, a common experience amongst people with epilepsy, do you know, or?

That they have to, it gets as...

That they - no, that they improve in pregnancy?

I, not that I know, no. But you could probably argue that epilepsy - a lot of epilepsy - is about having a sort of stable, calm lifestyle, and despite the fact a baby gets you up in the night and things like that, you are quite in control of what you do and don't do, you know. If I don't want to go out for the afternoon, or - it's not like having to go to work, you know. I can control my life. And actually that was one of the reasons I gave up work initially, was my consultant thought I could have a much calmer, stress-free, less - I had a very, quite a physically exerting job and that had an impact so, quite interesting. 

She needed to avoid getting too exhausted in labour in case it triggered an epileptic seizure....

Initially I, before - we didn't discuss it at the hospital, in regards to the epilepsy, until probably 24, 26 weeks - and initially I'd thought I perhaps might have to have a caesar because they didn't want me going through the strain of labour, because it's sort of - you're getting very tired, all of those things, all of which are triggers to my epilepsy. And, but that transpired that, no, I could, there was no reason why I couldn't have a normal delivery. That they would obviously monitor very closely how long it went on, and how exhausted I got. I know we discussed if I, perhaps I went into labour at ten at night, so I was approaching needing sleep already, to then go for eighteen hours and not really getting anywhere, then they might decide, you know, I'd gone on, it had gone on long enough.

But we were due to go and meet the whole team - went in for one of my appointments at thirty six weeks and we were due to go and meet the whole anaesthetics team and things that day. And discuss the epidural and all of that, which I wouldn't imagine the normal - you know, if you just had community midwifery, you wouldn't have that opportunity. But they wanted, you know, they wanted me to do that, so that I knew exactly what was going to happen, because I, that was very much the option I wanted, an epidural. I didn't want any pain. And I just thought I wanted to enjoy it and I, you know, I thought about the pros and cons of an epidural, the risks. You know, I have a good friend who's an anaesthetist. The risk, the risks are very low, even though they have to tell you about them. And I wanted to enjoy it, and I didn't want to be, I didn't have a great desire to be the new age mother who'd done the whole thing with only gas and air, and biting on her husband's hand. So you know, I wanted the easy option. If it's there, take it.

The pessaries for inducing labour made her very sick, but once she had an oxytocin drip and an...

Well, I had quite prepared myself for an induction. My mother had, has had four kids, all of which were induced. My sister, first one had to be induced. So I sort of felt it ran a bit in the family, so I was all expecting I had another five weeks to go. Three weeks till forty and two weeks till induction. So I really thought I would have a late baby. And I think I just thought that you, you know - I hadn't really, although I'd thought I'd be late and would have to be induced, I hadn't thought of the impact on that. It wasn't till I was told I was being induced next Thursday that I sat down and they went through all the problems that can have, and the stages you go through, and what have you. Some do it very quickly, some take for ever -

Presumably when they're inducing early like that it's different to when they're inducing for overdueness, because the chances are that you're pretty much ready to go.

I had - the, the way they did it was exactly the same. The only difference was that normally they put in the pessaries the night before. But mine didn't start until eight in the morning, so they didn't want to risk it happening at, at night, so I sort of went down with the shift change in midwives. So I'm sure it was all partly to do with that as well. They want you to try and have a midwife for as long as possible, and you know, I went down at eight o'clock and we started, and nothing happened, apart from I threw my guts up and spent the whole morning on the loo. But no movement at all.

That was as a result of the induction drugs?

Yeah, drugs. So I had a terrible reaction to them, and I literally, there was nothing left inside. I was either, had thrown it up or you know, been on the loo the whole time. So, and I was having sort of semi contractions, but my cervix hadn't opened at all. And so they tried breaking my waters, which was excruciating, when there was no, you know, nothing there to really - they put in a great big needle [a plastic hook, called an 'amnihook'] and there was nothing there to open, to let the, you know, the needle couldn't get in. And it was excruciating, and so they put me up on a drip to try and - which was the sort of next stage. I wish I could remember all the drugs, but I can't.

Syntocinon [oxytocin]?

Yeah, that's right. Syntocin drip, and, but also put the epidural in at the same time, so that they could start to try breaking my waters quite early. And then once the epidural had gone in, it was quite a pleasurable afternoon. We, things were moving; the baby was being monitored. It had a, when there was room to get it in, it had a clamp on its head, to check it was all all right. 

And, and things started moving really quite well. She went off to have tea, and, you know, said, "I don't think it's going to happen in my shift. You know, we'll have to get the next midwife in and introduce you to her", and what have you, and then I suddenly said to my husband, "Something's happening." And it had, it was about eight centimetres, my cervix, when she'd gone off, and then suddenly it all happened and twenty minutes later she popped out.