Information and support for mums-to-be with epilepsy

Epilepsy is one of the most common serious neurological conditions. Every year, around 2,400 babies are born to women who have epilepsy and are taking epilepsy medicines. Thankfully, the majority of mums-to-be with epilepsy have healthy pregnancies and healthy babies. However, with better care and support even more women with epilepsy could have a healthier and less anxious pregnancy.

Contraception and epilepsy medicines

Most people with epilepsy take epilepsy medicines to successfully stop or reduce the number of seizures they have. National guidance states that health professionals should give women with epilepsy accurate information about contraception. The findings of the Epilepsy Action survey ‘An ideal world for women’ suggest this is not happening. A quarter of women of child bearing age, replied that they had not received any information about epilepsy and contraception.

Yet this information is extremely important. Some epilepsy medicines are enzyme inducing. Women taking enzyme inducing medicines should be informed that they might interact with some hormonal contraceptives. This can reduce the effectiveness of the contraceptive, potentially leading to an unplanned pregnancy.

One mother understands this issue better than most: “In 2010 I had brain surgery, after which I developed epilepsy and started taking an epilepsy medicine. Come October, I wasn't well, and thought to myself ‘if I didn't know better, I'd say I was pregnant’. However I was using the progesterone implant so I knew that I couldn't be pregnant. Mum to three kids, I had just had brain surgery and recently been diagnosed with epilepsy. A baby was the last thing on my mind.

“Three weeks later, I took a pregnancy test and discovered that I WAS pregnant. In shock, I made an appointment with my GP. I was referred for a dating scan.… During the scan the sonographer asked us, ‘Are you trying for a baby?’ Obviously we said ‘No, why?’ ‘Well, both heartbeats are strong and fine!’ OMG, twins!”

Thankfully her twins are healthy and everything turned out well for the family.

Taking combined hormonal contraceptives can also interact with the epilepsy medicine lamotrigine, potentially leading to an increase in seizures. Clair describes her experience: “After yet another tonic-clonic seizure I asked my neurologist about lamotrigine interacting with the pill. He just shrugged it off and seemed uninterested, so I asked to see an epilepsy nurse. There wasn't one in our area, so I was referred to the team in London. Since then, my care has been amazing. I found out that I was right about the contraceptive pill. It could reduce lamotrigine levels and so I came off the pill.”

Epilepsy Action can provide further information about epilepsy medicines and contraception.

Information about pregnancy

Findings of the Ideal World for Women survey also suggests that a significant number of women aren't being given information about epilepsy and pregnancy. In fact over a quarter of women who have been pregnant during the last five years, or are planning on having a baby, said that they had not received this information.

Yet this information is vital for women with epilepsy who could potentially become pregnant (whether planned or not). For many women the information will generally be reassuring, as we know that the majority of pregnancies in mums-to-be with epilepsy are healthy, and their babies are too.

However there is a small risk of increased seizures during pregnancy and an increased risk of malformations in their unborn baby. Giving women detailed information and counselling about pregnancy is vital. It provides an opportunity for women to work with their doctors before they become pregnant, to identify potential risks relevant to their medical history and epilepsy medicines. Together they can then discuss steps to try and further reduce those risks where possible. Ingrid describes her experience: “When I realised things were getting serious between me and my now husband, I went for preconception counselling. I had been on Epilim (sodium valproate) pretty much since being diagnosed at 15. I knew that Epilim isn't ideal to be on while pregnant. As I had been seizure-free for about six years I was classed as low risk of having another seizure. The neurologist agreed I could gradually come off the Epilim and consider going onto lamotrigine if I started to get seizures.”

A risk free pregnancy?

Unfortunately no pregnancies are risk free - whether you have epilepsy or not. Due to the increased risk of seizures and/or malformations in the unborn baby, all pregnancies in women with epilepsy are classed as high risk. This means that the health of mum-to-be and her unborn baby should be carefully monitored throughout pregnancy. Then if a problem does occur, the specialist can act accordingly.

Seizures in pregnancy

Generally an occasional seizure during pregnancy poses no harm to the unborn baby, unless mum-to-be was injured during the seizure. For example, if she fell down the stairs. The risk of an accident is just one reason, why it is important to control seizures during pregnancy.

It is also important to control seizures because frequent seizures or status epilepticus might increase the risk of harm for mother and baby. Status epilepticus is when a seizure lasts longer than 30 minutes or a cluster of seizures last 30 minutes or longer with little or no recovery in between.

Thankfully, status epilepticus is very rare in pregnancy, and very few mums and babies are harmed by frequent seizures. But due to the potential risks, it's important for mums-to-be to talk to their epilepsy doctor as soon as possible, if their seizures increase or worsen during pregnancy. The risk is also severe enough, for experts to recommend that women with epilepsy give birth in hospital. As Nicola reports: “My neurologist increases my meds and I have to go into hospital - blood tests, more seizures, higher dose, more blood tests, and still the seizures keep coming. It's impossible to know what the right balance is - as low a dosage as possible to control the seizures, as neither the drugs nor the seizures are exactly ideal for my little one.”

Risk of malformations

In all pregnancies there is a small risk that the baby might have a malformation. Generally around two babies in every 100 born have a major congenital malformation (MCM). In babies born to mums who took epilepsy medicine in pregnancy, around four in every 100 babies have a MCM. However, the exact risk of a baby having a MCM depends on factors such as the type and number of epilepsy medicines mum-to-be is taking and at what dose.

Some epilepsy medicines, for example sodium valproate, carry more risks than others. With this medicine, there is also a risk of neurodevelopment impairments (for example, developmental delay or communication and speech problems) in babies born to mums who take epilepsy medicine sodium valproate during pregnancy.

Catherine took this medicine during her first pregnancy, and was unaware of the risks associated with the medicine. Her son Matthew was born with a number of health issues and disabilities. Catherine has the following advice for women taking epilepsy medicines: “Before your pregnancy discuss the latest data from the UK Epilepsy and Pregnancy Register with your epilepsy specialist. Also ask your epilepsy consultant about the services available to women with epilepsy in pregnancy at the hospitals in your area. And finally, ask to be referred for preconception counselling, to discuss all your opinions”.

Women who take this medicine might also want to talk to their midwife, health visitor or doctor about these risks if they are pregnant or planning a pregnancy. In the meantime it is advisable that they continue to take their epilepsy medicine. Suddenly stopping medication, can lead to more or worsening seizures. This isn't ideal for you or your unborn baby.

The HealthE mum-to-be campaign

As part of the HealthE mum-to-be campaign Epilepsy Action have created the Pregnancy diaries to support women with epilepsy and their families. The Pregnancy diaries were written by mums with epilepsy (including Claire, Ingrid and Catherine) and follow their pregnancy journeys. You can read the Pregnancy diaries online.

To further support mums-to-be with epilepsy, a resource pack for obstetricians, midwives and GPs is also available via the website. This pack shares up to date information and expertise on epilepsy in pregnancy.

Published: 28 February 2013