By: 3 April 2013

Epilepsy Action say women suffering from epilepsy don’t receive the information about contraception, conception and pregnancy that they need.

© Andy Newbold Photography

These findings are based on a survey released recently by Epilepsy Action. This means that they are unable to make informed decisions about their care and treatment before and during pregnancy.

All pregnancies in women with epilepsy are classed as high risk. Around 2,400 babies are born to women with epilepsy each year. Women with epilepsy and their unborn babies potentially face an increased risk of problems during pregnancy and birth. This is due to changing seizure patterns and taking certain epilepsy medicines. In extreme cases, babies can be born with a malformation, or the lives of mothers and babies can be put at risk.

With better information, care and treatment before and during pregnancy, it is possible to minimise the risks for more women with epilepsy. Epilepsy Action has launched a new campaign, HealthE mum-to-be, to provide this information to health professionals and women with epilepsy.

Epilepsy Action surveyed almost 500 women with epilepsy. The survey reveals that over a quarter (26 percent) of respondents who have been pregnant in the last five years or are planning on becoming pregnant, said a health professional had not discussed epilepsy and pregnancy with them. This is despite national guidelines, which state that pre-conception counselling should be given to women with epilepsy. This means that many women are never made aware of the risks associated with epilepsy and being pregnant.

Almost half of these women (49 percent) said they had not been given any information about changes to their seizure pattern. Epilepsy medicines may become less effective during pregnancy due to changes in the body, such as an increase in hormone levels. This can lead to breakthrough seizures.

Over a quarter of these women (28 percent) said they had not been given any information about possible risks associated with taking certain epilepsy medicines during pregnancy. These include malformations and breakthrough seizures. Health professionals should be providing this information to women with epilepsy before they become pregnant and throughout their pregnancy. This is so that women can be supported to minimise risks to them and their baby, for example by changing their epilepsy medicine.

Clair Cobbold, 28, from Surrey, was diagnosed with epilepsy when she was 19 and had her first child, Riley, in June. Clair said: “When I found out I was pregnant, I was worried about how my seizures and anti-epileptic medication might affect my baby. But regular scans revealed my baby was fine. Throughout my pregnancy my epilepsy specialist worked with the maternity team to monitor me closely and put a detailed plan in place for labour.

“I found thinking about having a baby, pregnancy, labour and looking after a baby when you have epilepsy, all very daunting. The most important things for me were health professionals understanding these concerns and hearing other mums’ experiences, knowing you are not alone. That’s why I’m supporting Epilepsy Action’s campaign.”

Nicole Crosby-McKenna, women’s officer at Epilepsy Action, said: “It is vital that women with epilepsy are given information about all aspects of pregnancy and epilepsy. This information should be given as early as possible, and ideally before they become pregnant. Women should be encouraged to work together with health professionals so that their care before, during and after pregnancy can be properly managed. This will help reduce the risk of increased seizures, maternal death and malformations in babies born to women with epilepsy.”


Epilepsy in Pregnancy

As part of the HealthE mum-to-be campaign, Epilepsy Action has launched a series of new and updated resources to support health professionals and women with epilepsy through pregnancy. The charity has updated its ‘Epilepsy in Pregnancy’ resource pack for obstetrics professionals for midwives and obstetricians. The pack helps health professionals learn more about epilepsy and ensure women with epilepsy get the support and advice they need during pregnancy. It includes updated resources that link to national guidelines for caring for mums-to-be with epilepsy. For more information, please visit: