The most important thing that you have to be aware of is that you keep your blood sugars within a normal range and by doing that it supposedly stops the baby from being too big and obviously causing further complications, could cause further complications. Another very important thing which I’ve never actually done is, they always say that you should have pre-planning counselling, pre-pregnancy counselling whereby they, you tell them you want, you are trying to have a baby. They then make sure that your sugars are at the optimum range before you actually conceive. And unfortunately with, with me that has never, never happened. Although all of my pregnancies have been planned in some way I’ve never actually sat down with anyone before getting pregnant and made sure that my blood sugars were at a good level.

Was that your choice?

It wasn’t a choice. It was just something that – I never really thought about it. I didn’t think [sigh]. I suppose you don’t actually think of what the consequences could be by not doing it. And because nothing, none of my previous problems have ever been put down to that fact that my levels were high when I started, when I became pregnant, I’ve never really thought about it.

So none of the miscarriages, nobody ever said that that’s more common with people with diabetes or anything?

Well obviously it, every thing that happens to me [cough] is in some way put down to the diabetes. Children with heart defects are more prone to mothers with diabetes. Miscarriages are more prone to mothers with diabetes. Stillbirths are more prone to mothers with diabetes. So, and morning sickness again is probably more prone to people who have got diabetes.

And every other Wednesday I would go to the hospital and see the obstetrician, a diabetic person, a diabetic doctor and also on occasion the midwife. And that was every two weeks from finding out. So and at that, at those appointments they checked your blood pressure, your urine, your sugars. Everything was done. I mean the care was fantastic and it also sort of helps you to make sure that your control is at the best levels that it can be.

Looking back do you think it would have been good to have had some pre counselling?

Yes. Definitely. Although they haven’t said that what happened to me was as a direct result of my diabetes, I think because there was no other reason that it probably was. Although I mean, they, they stressed that everything, I did everything humanly possible to make sure. Although I started, my level was high when I started, within weeks it was down to an acceptable level. And although they say that it probably had nothing to do with the diabetes I think somewhere deep in the back of my mind I think it probably was.

Will you ever get an answer to that?

No. No. We had a post mortem carried out and everything was absolutely with my son completely normal. The only thing – it, it came up as unexplained death. That’s the official report. But we obviously went to see the obstetrician with the report and results, and one of the things that he said is that they just, from a professional opinion think that, that my son just grew. He was too big and my placenta just basically gave up. Couldn’t feed him anymore, so. And that’s what – although that’s not the official result, that’s what they think. So.

Because the extra growth is something that is associated with…?

With the diabetes, yeah.

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, theres 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 – theres 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 shed actually already had the baby, and – but shed 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 shed 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.

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 theres 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 – hed phoned me to say hed 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.

I’ve actually really liked being looked after by another unit as well. I’ve felt a lot more secure about the pregnancy because you get a lot of extra care and a lot of extra attention. And I think it, as long as it turns out that, you know, I don’t have any problems, then I think it would have probably been the, one of the best pregnancies [laugh]. Because I’ve just had that, that, such extra care and, and people have just, you know, taken a lot more interest I think because of, because of it. And so I, I’ve seen the unit, my midwife and my GP a lot more often than I would have in a normal pregnancy. And I’ve had four scans up till now, not just to do with that, but two of them were certainly to do with that. So, yes, so you get to see your baby a bit more, which is always, you know, really comforting. So, yes, I think, it’s been nice in a way having that extra, and they are very, very nice people up there, they’re very helpful and they certainly know what they’re doing up there.

Do, how well coordinated are the different lots of care that you’re receiving? You’ve got a midwife, and you see a midwife and you see a GP and you see the people at the special unit. Is it quite joined up or is it not very joined up or..? How, how much coordination is there between them?

The coordination I think, I’ve opted out of seeing my GP now, because you can either see your, your midwife then your GP alternately throughout your pregnancy, but I was just feeling that there were too many people involved and I just wanted to get to know my midwife. So I’ve said that, you know, from early on in my pregnancy that I was, I just wanted to see her. They have been brilliant, they’ve coordinated with the unit, the special unit very well.

Yes, well, I had, I’ve had blood clots in the past and I was diagnosed as having a condition called Factor V Leiden, which means my blood is prone to clotting. And because pregnancy is an added risk of blood clotting we knew in advance that I would have to have treatment throughout the pregnancy for, to thin my blood. So I was put on low molecular weight heparin, which is a daily injection called Fragmin, which I was slightly concerned about being on it, partly because of, you know, whether there would be any risk to the, to the baby and also because the thought of having an injection every day for almost nine months was a bit off-putting. But in fact it wasn’t, once we got into the routine of it, it wasn’t a major thing at all, and it, and it went fine. And actually I think that probably reduces the risk of miscarriage a lot, because theres a risk of blood clotting in the placenta if you don’t have this treatment. So it was, it worked out okay.

So and who discussed the sort of issues and risks around your condition with you?

Well, I, my GP primarily, initially. And I had already had contact with a consultant in [city] who had, who’s a specialist in this condition, and she sent a letter to my GP explaining what the treatment should be. And then I went into [town], I went into the local hospital, and met with the consultant there and he confirmed that, what the, the treatment would be. And he was the person that I saw sort of now and again throughout the pregnancy to, to just discuss how things were progressing. He was very helpful.

So did you feel that, confident that that was being sort of looked after and..?

Yes, I did, I felt that everyone knew what the issue was and everyone seemed to be agreed on the treatment. I did actually also consult a few websites on, on the internet. And there was actually a support group for people suffering from this condition with a lot of information about pregnancy, and it confirmed that this was the appropriate treatment to be taking. And in fact at the very beginning, even before I got pregnant, I was slightly reluctant, wondering whether I would actually not, not do this and risk going ahead without having the injections. But having read some of the stories on the website I felt that it was very important that I did go through with this due to the risk of having a miscarriage.

What, what were some of the, what was some of the information that was available on this website?

There were quite a lot of personal stories about people who had lost babies at various stages in the pregnancy because of this condition and not having been diagnosed. And they were all basically saying, ‘If only wed known, we could have had the treatment. There are no known problems to the baby. The risks to, I think there is a slight risk for, to the mother of blood, bone thinning, thinning over a period of time. But it’s a minor sort of risk really compared to the sort of positive side of knowing you’ve got a much higher chance of having a healthy pregnancy. And that, that was all very clear on the website. So it was, it was mostly personal, it was, it’s more a sort of exchange of information site between, between people with the condition.

It’s just that, it’s really the talking to friends about, about tests that you can now have in pregnancy, to see if your baby is okay or not, then we were very certain that wed have all the tests we could possibly have, because we knew absolutely one hundred percent, if there was any chance of that baby having any form of disability, that as a partnership we wouldn’t be able to cope. So it always felt very harsh and like we were going for the perfect child, and anything less than perfect wouldn’t do, but in reality that’s, that’s what it was like. We had to have a child that wouldn’t need any extra care like I do.

Have you tried to talk to your friends about that?

They’re

Have they been surprised?

They’re – no, they’re all completely understanding about it. And, you know, when they’ve been talking about, ‘Oh no, weve said that well have the baby and it doesn’t matter if it has a disability. And I’ve said, ‘Mmm, were not able to say that actually. And they’ve always said, ‘Oh God, we completely understand, completely understand what you’re talking about. But it’s still an issue that’s sets me apart from them. I’m not the same.

Have you felt that a lot during pregnancy and parenthood?

I think probably that I’ve got used to the fact that, you know, I’m a teacher, and I am in a wheelchair, but hey I’ve just got to get on with it, and that’s the way it is, and there isn’t a choice in this matter so just cope with it. And I think when you’re pregnant you need allies and you need to think, ‘Oh yeah, I, that happened to me as well. Or, ‘I know what you mean’ whereas there was never really that [sighs], never really that comfort blanket really, for me, so I felt quite alone.

When did you find out about the disabled parents support group that you were talking about?

Theres a unit at the Disabled Service at the hospital that, that has a couple of qualified people who specifically look after disabled mothers, so I was able to go and try out some equipment, and they provided a beanbag that I could breastfeed from and yeah, I was able to hold this nine pound doll and put it back in the cot and I thought, ‘Oh theres no way I’m going to be able to hold a nine pound baby, that’s really heavy. And they said, ‘There is actually a network that disabled parents have started, so Disabled Parents International brings together parents from all over the world who are handling, being disabled and having children. So that’s actually been a great source of information, but theres also local agencies as well.

Mmm, but none of those organise antenatal support?

No they don’t.

Mmm.

I think it’s quite rare actually to be somebody in a wheelchair, and having a baby. There seems to lots of blind mothers, or deaf mothers, or learning disabilities, but the wheelchair seems to be quite unusual.

It was really, you know, knowing how I am and how I like to know about things, and how I like to be involved, and in control, and it’s my life and I’ll look after it myself, then I completely surrendered in pregnancy. And, you know, going into another pregnancy, then it will be different. I won’t just surrender, because I know more about it and I know more about what happened to me after the first pregnancy so I will, I will be more thoughtful and more proactive.

Mmm. Just say a bit about you, your, what you were saying earlier about sort of being an expert in one set of conditions and then this sort of feeling of novice stuff.

Yeah, I don’t know whether it was like symptom overload but I was quite au fait with what was wrong with me, and how that affected me and how I handled it, but then having other symptoms put on top which actually belonged to another condition called pregnancy, then that did seem like an overload, and I thought, ‘No, no, these people know much more about it than me and I’m, I’ll just let them get on with it. But which is quite bizarre because it was actually happening to me whereas I let them handle it…

Mmm.

But I feel very strongly that it won’t be like that again.

See, I don’t know really how my situation could be sort of replicated because I am in shock still at how much I gave over to health professionals. And actually they’re professionals but they’re not experts in me, only I’m an expert in me. And I can’t believe that I surrendered so much [laughs]. It really is a big source of surprise to me.

Especially when you are so used to being the expert in your.

Oh yeah, but then ironically I gave over to the professionals and then it all went really badly wrong.

Yes, because you said you were questioning that the Heparin incident?

I actually said, ‘Are you sure I should have this?’ And the nurse said, ‘Yes, it says so in your notes. But actually the notes hadn’t been checked so I shouldn’t have had…

And you knew that?

I did, but because I was still in my sponge state of just accepting things being done to me then I said, ‘Okay.

Can you tell me how you found out you were pregnant?

Went to the doctors and he told us and because I remembered I was asked for my baclofen because I have to have my baclofen for my cerebral palsy and he wouldn’st let me have that.

You wanted to have your bac?

I have to have baclofen.

Right.

For my cerebral palsy.

Right.

And they wouldn’st let me have my baclofen. Until they did a test and they did a test and that’s how I found out.

Oh was it, what, they were worried that the medication, they were, they thought you might be pregnant.

Yeah, something to do with the medication. You can’st have baclofen when you’sre pregnant.

Right.

So then I was left with back pain and leg pain and I asked to see a physiotherapist. I have a physiotherapist anyway with my cerebral palsy but they couldn’st treat me because it was due to being pregnant, not due to my actual cerebral palsy. So again, I went through the whole pregnancy being in pain and like I only have one physiotherapy session, when I was eight months, and all they did was tell me how to sit and stand. They didn’st give me another appointment.