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of everyone affected by epilepsy

 

Rebecca

Planning

When I was diagnosed in 2008 my symptoms were quite severe. I wasn't able to work and day-to-day tasks were a struggle. At this point I thought I might never be able to have children, as there was no way I would be able to look after a baby. As my symptoms improved it started to seem like a possibility again.

My neurologist was really helpful. She had prescribed folic acid when I was first diagnosed [with epilepsy] so that was already covered. She talked to me about the increased risk of birth malformations while taking anti-epileptic drugs (AEDs). We also talked about the likelihood that seizure activity can increase towards the end of pregnancy. I was told that I would probably need to increase my medication in the last trimester.

I was also given the number for a research nurse from the UK Epilepsy and Pregnancy Register. The conversation I had with her was very helpful. She talked to me specifically about lamotrigine. She explained it was one of the safer drugs, but that there was still a small increased risk of birth malformations.

She couldn't tell me what to do of course, but my decision was starting to sway towards carrying on with the medication. I had to weigh up the risk of my baby being affected by the medication, against the risks to us both, if I had uncontrolled seizures.

The moment I knew I was pregnant

We were still in the process of thinking about whether to have a baby or not, when I discovered I was pregnant! It might have been fate, but whatever it was, it was happening and the decision had been taken out of our hands!

When I found out I was pregnant, I felt fairly prepared in a practical sense due to the research I'd done, but I still felt really frightened. Will my epilepsy get worse during pregnancy? What about the birth? What if the medication harms the baby? Will I have breakthrough seizures? Will I be able to look after my baby? How will I cope with the sleep deprivation?

I also had all the concerns that people without epilepsy have too. Where we would live? How would we manage for money? What impact is a baby going to have on our relationship? Although I had all of these feelings I knew it would be ok. We would deal with one thing at a time and we'd find a way to sort all of these things out.

The first 12 weeks

When my first visit to the midwife came around I was really nervous and excited! It was my first pregnancy, so I had no idea what to expect. I had a lot of questions about both my pregnancy and my epilepsy. I received good information about the pregnancy. But when I asked about my epilepsy she said: “I only deal with the ordinary” and therefore I would be referred to the ominously named 'High Risk Clinic'.

I felt worried about having to wait to find out how my epilepsy would be managed throughout my pregnancy. But I also felt reassured that there would be additional support available if needed. Luckily at this point in my pregnancy I was completely symptom free. My concerns at the beginning were much more about birth malformations and the impact of my medication.

Just by chance I had an appointment with my neurologist coming up. My neurologist is great. I always feel happy with the outcome of my appointments with her. The only down side is that she spends so long with each patient that sometimes you wait hours to see her!

Thankfully, my appointment date arrived and I found it as useful as always. She reassured me that my decision to continue taking my medication during pregnancy, had been a sound one. She said that breastfeeding would be safe. This is because my baby would have already been exposed to the lamotrigine in the womb - I found this a horrible idea! She also talked me through some safety issues involved in having a small child and epilepsy. I felt she was reassuring but also totally honest which I appreciated.

My neurologist also suggested that I saw her again, when I was six months pregnant. However, the earliest appointment available was six months. I would be eight months pregnant by then - this wasn't much use!

Coping with challenges

Using the natural intrauterine insemination technique IUI [a type of fertility treatment] it took us three years to conceive first time around. But I miscarried at three months.

We feel lucky to have fallen pregnant again, a year later (again using natural IUI technique). This time we went full term and I gave birth to a healthy, happy baby boy.

The reproduction unit that we ended up dealing with were incredibly supportive. They followed my lead in how I approached my epilepsy. I viewed it as an inconvenience. I wouldn’t let it hold me back in any of my plans. But I acknowledged my limitations, and any likely impact on children we would be lucky enough to have. We also had numerous ultrasound scans. A very early one (six weeks) as we'd had reproductive assistance and anyone going through that unit is given a six week scan.

Given our earlier loss, the hospital were lovely and gave us a 10 week scan for our sanity to prove the little bean was still alive and well. We then had the normal 12 and 20-week scans.

Tests and scans

My 12-week scan was completely surreal. I had been feeling very ill with morning sickness - why is it called morning sickness when it lasts all day! So there was no doubt in my mind that I was pregnant. But until I saw that tiny shape pop up on the screen, I really didn't believe it could be true. As soon as I saw that little blob, everything seemed to change. I was going to be a mum. Hearing the heart beat was unbelievable. There really was the start of a new little person in there. I felt so excited. I realised then that - epilepsy or no epilepsy - this was going to be an amazing experience and a new adventure for me and my husband to share.

My experience of the 20-week scan was really different. I was terrified that something would be wrong with the baby and I would blame myself for continuing to take my medication. I started to wonder if I'd been selfish to carry on taking it. Wasn't the baby more important than me being ill? Thankfully I found out that my baby (a boy!) appeared to be developing well and was very big for his age. It was such a relief!
I had some extra scans later on in pregnancy and every time they said something like 'he's a big boy isn't he'. Whenever one of the midwives took a measurement of my stomach, they raised their eyebrows a little! At first I was very proud of this, but as the birth got closer that changed to fear. Fear about how this giant baby was going to come out of my body!

Coping with seizures

One day when I was around seven months pregnant, I felt that familiar feeling of strangeness coming over me. I stopped what I was doing. I let the sensations just wash over me and tried not to panic (as I used to do when I first had them). They [the seizures] were back!
During my seizures I am conscious but have reduced awareness of my immediate surroundings. I will respond but often experience extreme deja vu or a feeling of being somewhere in the past. The seizures, while unpleasant, are over very quickly. My main problem is that when I am having a cluster of seizures (maybe three or four a day for a few days) I generally feel very confused. I find it hard to understand what people are saying to me, difficulty finding words when trying to explain something, and problems with my short-term memory. However, for a couple of years before I became pregnant I was almost symptom free, other than when I was particularly tired or stressed.

I went to see the midwife. She got me an appointment sooner than was scheduled, at the high risk clinic. There wasn't really much time to involve the neurologist but to be honest I don't think it made any difference to the treatment. Luckily I knew what dosage increase had been recommended. I didn't feel too worried about the seizures as I think I had been prepared for it. The seizures did continue after I'd increased the medication but they didn't get worse. I kept having a few but they weren't too frequent or severe.

Preparing for the birth

The return of the seizures did make me more anxious about the birth. I was really worried that the symptoms [seizures] would be really bad during labour. I didn't want to start out with my son having a horrible experience of labour or put either of us in any danger. What if I couldn't understand what they were telling me or when to push? What if I didn't remember him being born? The high risk clinic was still just saying: “We'll manage it at the time!”

My experience of the high risk clinic was quite different to the contact with my neurologist and epilepsy nurse. My doctors at the clinic were an obstetrician and another consultant (who I later found out was a diabetes and endocrinology specialist). I saw them very regularly throughout my pregnancy. But the appointments always felt rushed, and I never left feeling satisfied with what I had been told or that I'd had my questions answered. One visit towards the end of my pregnancy was particularly difficult as I was very confused and couldn't follow what they were saying. Luckily my husband was with me that day!

I tried to explain the exact nature of my epilepsy, but it is difficult to put into words. I don't think they appreciated the magnitude of these problems. I felt that because I didn't have tonic-clonic seizures, it was the end of the conversation. I just didn't feel they took it seriously. My symptoms were nowhere near their worst during this period. But nevertheless I was very anxious that they would become severe during labour. This seemed a real possibility, as I find tiredness, hunger and stress are three major triggers.

I wasn't happy, so I was offered the option of being referred to another doctor (at the birth choices clinic). The doctor there was much more willing to listen to what I said about the birth. Both from a practical and emotional point of view, and in discussing the options available. She did talk a bit more about what they would do during the birth, and I also was given the choice of having a C-section.

Labour

In April (2012) I had a beautiful, healthy, baby boy. In fact I have written most of this diary with him next to me either sleeping, screeching or gurgling. He was 8lb 6oz, so a good healthy size but not huge! I couldn't feel luckier after all of my concerns about the effects of my medication, and my anxiety about the birth.

I had a caesarean section in the end which all turned out fine. He let out an enormous scream when he was born and, although I was a bit groggy, I remember seeing his lovely dark hair when they put him next to me.

The downside to having a caesarean was that I couldn't get out of bed for about 24 hours, and couldn't move around much at all for a couple of days after that. It was really frustrating not being able to pick him up when he cried. I had to wait for a nurse to come and help me, which sometimes took a while.

I didn't sleep the whole time I was in the hospital and felt that my epilepsy was a bit overlooked. I had to ask if they [the midwives] could look after him for a little while so I could sleep for a couple of hours, but they didn't seem very keen. I felt awful for wanting them to take him. But it was very hard to cope with feeling so uncomfortable, not having any sleep and adjusting to having a baby to look after. I had absolutely no experience with children so it was all pretty daunting.

Life as a new mum

I have been incredibly lucky as I’ve had very few problems since Max was born, despite being exposed to all of the main triggers! I do worry about the future, even though I know I am incredibly lucky to be as well as I am. What if my symptoms return? Will I be able to look after him? I worry that if I get really confused it could put him at risk in some way.

Motherhood is hard to put into words. It is a wonderful experience with moments of absolute amazement at this little person I've helped to create. Every time he does something new it feels like a little miracle (which sounds corny but I can't think how else to explain it!). At times it is so overwhelming that I wonder if I am really cut out for it, or if I'll be able to cope.

I haven't had much follow-up regarding my epilepsy since I had my son. I have had appointments with midwives and health visitors, but they haven't really asked about my epilepsy until I have mentioned it. Early on I think a couple of the midwives asked if I was taking my medication. I must admit I did forget to take it a few times, in the first couple of weeks. The days and nights became a bit of a blur and so I would lose track of what time of day it was! I started writing it down which helped.

One thing that did worry me a little is that I felt under a lot of pressure to breastfeed. I tried very hard, but found it wasn't working out for me. I felt under a lot of pressure from midwives, even after I had decided to stop. This worries me a little. Feeding was much more frequent when breastfeeding compared to feeding from a bottle. Also, although you can express milk it is harder for someone to share the feeding duties with the mother if you breastfeed. These things mean that sleep is more likely to be disrupted and midwives could be more conscious of that issue. For women with epilepsy irregular sleep patterns are a trigger of seizures.

Final thoughts

Get as much advice as you can before you are pregnant and in the early days so that you feel prepared. Sometimes you need to be a bit forceful with medical professionals to get what you need. Then try to enjoy the experience of being pregnant as much as you can, because it goes really quickly.

Rebecca
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