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Cosima Pole, empowering women with epilepsy

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23 September 2014

Cosima Pole is passionate about empowering women with epilepsy, especially when it comes to  having children. She is championing Epilepsy Society's new women and epilepsy survey and, together with her younger daughter Juno, is the face of our poster campaign.  Here she talks about her first pregnancy and explains why it's so important for women to get the facts.

Cosima Pole and her daughterBeing a woman and planning for a baby can be hard enough. If you throw epilepsy into the mix, the hurdles that have to be cleared can be enormous.

I was on three anti-epileptic drugs  (AEDs) when my boyfriend Nick and I first started thinking about our future, which included having a family. Although children were a long way off at that time, I was so worried I felt the need to talk to my GP, my neurologist and my gynaecologist.  I wanted to make sure we had a proper plan in place, as risk free as possible for me and any future baby. 

Under supervision, I gradually reduced my meds from three drugs, down to just one, Keppra -  as I'd been told each additional drug taken during pregnancy increases the risk of foetal malformation.

It was a slow process but it went well and we even decided to get married during this time. We had the most amazing wedding with not a seizure in sight.  It was truly magical.

It was a bit more magical than even we had realised.  Six weeks later, I discovered I was pregnant.  WOW.  Despite the fact that Nick and I had planned and prepared for this, when I discovered I was pregnant, I panicked and dropped my one drug right down to a minimal dose.  It was a very tricky time.  My wonderful neurologist was on annual leave.  I had to register with a new GP surgery closer to home, who didn’t know my medical history.  I was in a complete panic about my AEDs damaging the baby. I couldn’t get an appointment with the new surgery until my notes came through. I couldn’t see a midwife until I was 12 weeks pregnant, so I was stuck in a limbo land of not knowing what to do.

Then I got lost in the NHS system and felt I had no medical support. I ended up going to see my gynaecologist privately and paid for my first scan. This cost a lot of money, but having the scan was reassuring and calmed me down.

I first saw my midwife at 14 weeks. She was wonderful and spent ages going through everything, continuously reassuring me and answering my many questions.  I wish I’d had her from day one.  I also joined the UK Epilepsy and Pregnancy Register.  They were so helpful answering  all my questions about pain relief, pregnancy etc. I confess I called them many times during my pregnancy.

I had been terrified that I would have a seizure during the delivery, but I pushed that fear into learning about pregnancy, birth, keeping calm, anti-natal classes and researching breast feeding on AEDs...  I knew a water birth wasn’t an option because of my epilepsy, and decided that the best way for me to stay calm in labour was to have an epidural the moment the pain got too much.  Once the epidural was in and the pain was gone, everything progressed pretty quickly and calmly.  Nick was amazing, taking charge of everything and trying to keep me calm.  Giving birth was an amazing experience and we left hospital a few hours later with our gorgeous baby girl, Ruby Tuesday.

We had a basic plan that I would breast feed Ruby for as long as possible, expressing milk so that Nick could do the night feeds and I could catch up on sleep.  In the end, it didn’t quite work out like that as it was much easier for me to just feed her in the night and for Nick to sleep, so he was bright and alert in the day and could take over a couple of feeds and I could catch up on sleep then. 

I had a small seizure when she was four weeks old, but we’ve put this down to me missing a day of meds and lack of sleep, I’ve been absolutely fine ever since.  I wanted to breast feed Ruby as long as I could, but also agreed to listen to my neurologist and take advice on when to stop.  When Ruby was ten days old we took her to an appointment to make sure she wasn’t being affected by my drugs... she screamed throughout and we all took this as confirmation that she was fine on the small amount of meds coming through in my milk. 

She was checked again at four months, and although she had no signs of being affected by Keppra, we decided to wean her onto formula very slowly between five and six months, purely because there is so little information out there.

Having a baby was a wonderful experience, so much so that we repeated it two years later and now have another little girl called Juno.

I believe women with epilepsy need to be totally empowered with as much information as possible to make important life decisions. I hope many women take part in Epilepsy Society's survey to inform the charity's work. I also urge any pregnant woman with epilepsy, now and in the future, to contact the UK Epilepsy and Pregnancy register - the more information we all have the better.