My struggle with epilepsy during pregnancy

Nicola Schafer found out she had epilepsy as an adult. It left her worried about how it would affect her pregnancy. Here’s her story

When did you first find out you had epilepsy and how did this make you feel?
About 3 1/2 years ago I woke up in my lounge to see ambulance men, my neighbour and my flat mate all staring at me. I'd just had my first witnessed tonic clonic seizure. It was probably my second, the first time I was by myself and didn't realise at the time what had happened. When I was given the diagnosis, it was a relief in a way because my brain had being doing other strange things and I thought I was going mad!

How has it affected your life?
The main impact has been not driving, as that has affected where we can live (e.g. not out in the countryside), and also although I could carry on with my job at the time, not being able to drive has limited where I can get a job and what sort of job I can do.

Did you worry about how epilepsy might affect your pregnancy?
Yes, very much so. There are significantly higher risks of major birth malformations for women with epilepsy and these are down to both the condition and the medication so it's a delicate balancing act.

What are the dangers of having epilepsy during pregnancy?
Major birth malformations like spina bifada. Also you could fall over and hurt your baby as well as yourself if you had a seizure. With a full tonic clonic seizure you stop breathing so that can't be good for the baby.

Were you given the correct information about epilepsy during pregnancy from your consultant?
Yes, but the problem is that there is very little data on what the risks are because it's not the kind of thing you can run clinical trials on! So there is very little information, although results of pregnancies of women with epilepsy are collated by the Epilepsy Pregnancy Register.

What were your personal concerns about having epilepsy and being pregnant?
I was concerned that I might have a seizure during labour because my seizures are triggered by stress and tiredness - features of childbirth! For this reason I asked if I could have a Caesarean but I was turned down because apparently it is really rare. I did give birth in the high risk ward at Queen Charlottes though in case of any potential complications.
 
What was your experience of giving birth like?
My waters broke, but I didn't go into labour straight away so I had to be induced. I had a 20 hour labour, but I had an epidural so it wasn't too bad. Every hour I was asked if I wanted to be topped up and every time I thought about it, but not for that long! At the end my baby had to be sucked out with a ventrouse, because his heart beat was falling, but he was fine thankfully. After I got home the hospital sent me a patient satisfaction questionaire including the question 'was my privacy respected?'. One of my clearest memories is of a room full of professionals - several midwives, the registrar, an anaesthetist and the consultant all staring at my vagina. But at the time I was glad to have all the medical attention I did.

Did you have any fits whilst you were pregnant and how could they affect your baby?
Yes, in the second trimester I started having lots of small seizures, and my neurologist kept increasing my dose until it was well over double what I had been taking, which wasn't ideal because of the risks of the medication to the babies growth particularly of the spine. However the main impact is in the first trimester so it could have been a lot worse, and it was important to make sure I didn't have a tonic clonic seizure.
 
How do you find having epilepsy and being a mum?
No problem at all. Again the main thing is not being able to drive but that encouraged me to walk everywhere and that helped burn off the baby fat so not a bad thing.

What advice/tips would you give to any women out there who are epileptic and pregnant?
It's very important not to reduce or come off epilepsy medication without speaking to your neurologist first. Apart from that, making sure you have close contact with your neurologist or consultant throughout your pregnancy is vital as midwives know a lot about pregnancy obviously but they are generally not experts in epilepsy. But having epilepsy does not stop thousands of women having normal healthy pregnancies and babies, so try not to worry about things you can't do anything about and enjoy the very special experience of your baby growing and developing inside you.

For more information:
Information packs for health professionals and women will be available from September onwards by visiting Epilepsy Action's website www.epilepsy.org.uk, or by calling the Epilepsy Helpline freephone 0808 800 5050.