Ellie Woodcock, 29, has epilepsy and is mum to a healthy daughter, Daisy. She had three or four seizures a week during her pregnancy.
“Being a mum is wonderful, but my partner, Keith, and I had to think very carefully about having a baby. I have a brain tumour and epilepsy. I’m on anti-epileptic medication, but I still have a few seizures (fits) a week.
I spoke to my specialist before getting pregnant
"Some medication and the seizures themselves can be harmful for the baby, so I spoke to my epilepsy specialist before I got pregnant. We needed to weigh up the risks of reducing my medication, me having seizures and the possibility of the baby having a disability. I started taking folic acid and gradually came off one of the two drugs I was taking. As soon as I was off the drug, Keith and I started trying. I got pregnant within a month.
"I hadn’t had a tonic-clonic seizure for over a year. During this kind of seizure, I lose consciousness, my limbs shake, I bite the inside of my mouth and I feel very confused afterwards."
"My seizures started in July 2004. The first one was a massive tonic-clonic in a hotel the morning after a hen night. My sister called an ambulance, but the staff at the hospital said it could be low blood sugar and they didn’t investigate any further.
"Over the next few months, I kept being sick without realising it. It happened on the street and on the bus. I’d be OK, then suddenly there’d be a puddle of vomit in front of me. I didn't feel sick beforehand, and I didn't remember doing it. It was quite embarrassing. I now know these were seizures. In September 2004, after a series of tonic-clonic seizures, an MRI scan showed a brain tumour.
"It’s an intermediate tumour, which means it isn’t cancer but it grows, and it'll become malignant one day. I had surgery but carried on having about three seizures a week, both tonic-clonic and complex partial seizures. During a complex partial seizure, my eyes roll back, my jaw drops, my arms come up and I dribble or vomit. I know I’m having a seizure, but don’t know where I am."
My life changed completely
"I couldn’t work, couldn’t shop on my own and I couldn’t be left alone at night. Keith and I had been together for only a few months, but he’s always been very supportive. I’ve tried every kind of medication. My epilepsy specialist calls me a troublemaker because I get every side effect!
"At times I’ve been on four drugs at once. Some gave me paranoia and hallucinations. Once, in a shop, I thought all the dummies had turned into people. It was horrible.
"After further surgery on the tumour in January 2007, my tonic-clonic seizures stopped, which was great. After 10 months, I asked my cancer specialist about pregnancy. He said it would be a good time."
Seizures during pregnancy
"The pregnancy itself went well. I didn’t even have morning sickness. But at 10 weeks, I had a tonic-clonic seizure and they kept happening every 10 days or so. Before a seizure, I always felt panic and had a headrush, so I had enough warning to shout for Keith and lie down. I was still very worried about the baby.
"I had extra ultrasound scans and it was always such a relief when they showed there was no abnormality. When I was 32 weeks pregnant, we introduced another drug to control the seizures, which became less severe and less frequent.
"Towards the end of my pregnancy, I felt very tired and was falling asleep everywhere, even in the bath. I was scared about having seizures during the birth. Lots of women don’t, but I knew that I would because my seizures are triggered by tiredness. The pregnancy specialist advised giving birth in hospital with pain relief. They didn’t want me to have a caesarean if possible, to avoid the long recovery period."
"My labour was induced at 40 weeks. I had gas and air followed by an epidural, so I didn’t feel much. I was in full labour for almost 17 hours and had four big seizures during that time. I had enough warning to shout "fit!", so everyone knew it was coming.
"The staff were brilliant. They gave me oxygen and the midwife was very calming. Daisy was born by ventouse (a suction cap to help the baby out) and got 10 out of 10 on her health check.
"She's amazing. I can’t believe it, after all my worries about her having disabilities. We went home the day after she was born. Nights are hard, but Keith helps a lot. I'm not breastfeeding because tiredness causes seizures, so it's useful for Keith to be able to help with the feeds. I don't want to put Daisy at risk of drinking my medication through the breastmilk.
"I haven’t had any tonic-clonic seizures since the birth, but I have around two complex partial ones a day. I get enough warning to put Daisy down safely and call for Keith.
"I couldn't go through another pregnancy, but Daisy is wonderful. She’s so alert and I’m very grateful.”
Help research into epilepsy treatment in pregnancy
The UK epilepsy and pregnancy register is a nationwide project investigating which epilepsy treatments pose the lowest risk to a baby's health. When they register, pregnant women with epilepsy provide information about the treatment they're taking. Information about the health of their baby is collected after the child is delivered.
This helps doctors give the best advice to women who are thinking of getting pregnant. Any pregnant woman with epilepsy can join the UK epilepsy and pregnancy register.
Epilepsy medication and pregnancy
Anti-epileptic drugs may affect the development of an unborn baby. To minimise risks to your baby's development, it is sometimes possible to switch to safer drugs, reduce the total dose or change the way drugs are given.
It is usually better to make changes to drug treatment before rather than during pregnancy. Before you become pregnant, discuss your treatment with an obstetrician or neurologist who knows about epilepsy.
Do not alter your drug treatment or stop taking treatment without specialist advice, espcially during pregnancy.
Find out more about epilepsy and pregnancy, including drug treatment.