These diaries were written in 2012 by mums with epilepsy. Lots of mums-to-be have found them really helpful and reassuring.
For up-to-date information about epilepsy and having a baby, go to Epilepsy Action's advice and information pages.
Getting ready for the birth, now that’s a time of pure excitement and fear! Fingers crossed for a quick, straightforward labour, but is there anything else you can do to help things along? Here’s how our mums prepared for the birth.
Discussing the options with a helpful doctor really helped
Rebecca: 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.
What if I have a seizure during the birth?
Nicola: I am starting to think about the birth now. No home birth for me! I’m worried that, since stress and tiredness trigger my seizures, I might have one during labour. I talk to the antenatal consultant about a potential elective caesarean but it is dismissed out of hand with little explanation. I leave in tears, determined to get a second opinion.
The appointment for the second opinion is more successful. The doctor carefully explains that the incidence of seizures during labour is virtually unknown. She reassures me that the necessary emergency procedures will be in place should this very unlikely event occur. She also gives me a prescription for some extra medication to take during labour to make it even less likely. So it looks like it’s going to be a vaginal birth… I’m so glad I decided to get a second opinion. It made so much difference to talk it through with a sympathetic professional, even if the decision was the same.
Feel confident in your specialist’s knowledge
Clair: My epilepsy specialist worked with the hospital I was having my baby at, to put a plan in place for the labour. Diazepam was made available in the room (to be given if I had a seizure). I took 10mg of clobazam every 12 hours during labour to boost my seizure threshold a bit. I also saw the anaesthetist during pregnancy to discuss epidurals. It was decided I should have one early to control the pain (which I was concerned could trigger a seizure) and also to make it easier to carry out a caesarean in an emergency.
It is really important you always follow your specialist’s advice. It is so important to feel confident in their knowledge, able to ask questions and clarify what they say. You should also feel able to share your feelings and worries with them. It is also important to make sure your partner is happy with the plan too.
I was particularly lucky in that my friend (from when we were two and a half) was a student midwife at the hospital where I was having my baby. She used me as a case study so attended all my appointments, helped deliver my baby and had really looked into epilepsy. She made sure all the plans and information were clearly in my notes and was a really good advocate for me, throughout. I would definitely say if a midwife student does approach you as a case study, do consider agreeing. I know it’s not for everyone, but it means that they will become more specialised in looking after women with epilepsy. They can actually benefit you by knowing everything about your pregnancy and labour plans. They won’t deliver your baby alone and you can decide exactly how much input they have. Just something to consider…