Seizing control

Midwives magazine: August 2010

Midwife and epilepsy specialist nurse Beth Irwin from the UK Epilepsy and Pregnancy Register explores the physical, psychological and emotional challenges presented by epilepsy in pregnancy.

Epilepsy is one of the most common neurological conditions, affecting one in 131 people in the UK (Skills for Health, 2008). Since about 25% of people with epilepsy are women of childbearing age and many will require long-term treatment with anti-epileptic drugs (AEDs), a significant number of pregnancies occur in women taking AEDs.

Epilepsy is a complex disorder, individual to each person. Women with the condition can pose a challenge during pregnancy. The Confidential enquiry into maternal deaths (Lewis, 2007) has recognised epilepsy – classified as an indirect cause of maternal death – as over represented.

Previously reported studies on the safety of AEDs in pregnancy have suggested a two- to three-fold increase in major congenital malformation rates in the infants of mothers with epilepsy. The UK Epilepsy and Pregnancy Register is a prospective, observational registration and follow-up study. The aim of this study is to obtain information on the relative risks of major congenital malformations, the types of malformations that occur and the effect, if any, of drug dosage.

Pregnancy issues
The relationships between epilepsy and pregnancy are complex. Seizures may increase or even decrease during pregnancy. The reasons for this are likely to be multiple, but include altered drug handling in pregnancy and issues surrounding drug compliance (Schmidt et al, 1983; Williams et al, 2002).

There is evidence from the existing epilepsy and pregnancy registers of an increase in major malformations (Morrow et al, 2006; Holmes and Wyszynski, 2004; Vajda et al, 2005) and later neurodevelopmental problems (Adab et al, 2001; Meador et al, 2009) among offspring exposed to AEDs compared with those not exposed. A preconception dose of folic acid at 5mg and at least to the end of the first trimester is recommended for women with the condition (Stokes et al, 2004).

Fairgrieve et al (2000) found the care of  women with epilepsy to be less than ideal. In a prospective study of pregnancies, through midwives and review of medical records, they found methods of preconceptual counselling to be ineffective, with poor control of seizures, compliance of medication variable and less than 50% of the pregnancies planned. With regard to the pregnancy itself and obstetric complications in particular, there are few studies that evaluate the effect of epilepsy on pregnancy from the obstetric and neonatal perspective.

Some of the existing studies infer an increase in the risk of common complications of pregnancy, such as pre-eclampsia, bleeding and premature labour (Yerby et al, 1985; Nelson and Ellenberg, 1982), and an increase in prenatal mortality has been reported in a number of earlier and often retrospective studies (Nelson and Ellenberg, 1982; Hiilesmaa et al, 1981). More recent studies have not confirmed these increased risks (Viinikainen et al, 2006; Richmond et al, 2004).

Well-planned antenatal care, careful monitoring of AED treatment and appropriate antenatal testing increase the likelihood of a normal outcome (Viinikainen et al, 2006). This care should also include advice and information on the potential risks of complications, the advisability of breastfeeding and the safety aspects of caring for a young infant.

It is generally acknowledged that there may be an increased risk of seizure breakthrough in the postpartum period. This can be related to a number of factors such as hormonal change and lack of sleep. It is during this time that  women need support and reassurance. Bagshaw et al (2008) in a small cohort of 84 women concluded that women do experience problems when caring for their children, with particular emphasis on bathing the baby and taking the baby outside the home.  

Conclusion
The management of pregnant women with epilepsy presents unique challenges. There is limited evidence to inform health professionals – meaningful data could be gathered through registers and ongoing prospective studies. The lack of appropriate and consistent management leads to suboptimal care and conflicting or inconsistent advice in both primary and secondary healthcare sectors. As professionals caring for this patient group, we need to be sensitive to the women’s anxieties and be prepared to manage both their medical condition and emotional needs. 

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Further information
Women can be referred to the UK Epilepsy and Pregnancy Register by downloading registration forms from the website at: www.epilepsyandpregnancy.co.uk or by contacting the free telephone number: 0800 389 1248. For midwives in the Irish Republic, the contact details are at: www.epilepsypregnancyregister.ie and Tel: 1800 320 820.


References

Adab N, et al. (2001) Additional educational needs in children born to mothers with epilepsy. Journal of Neurology, Neurosurgery and Psychiatry 70: 15-21.

Bagshaw J, et al. (2008) Problems that mother’s with epilepsy experience when caring for their children. Seizure 17: 42-8.

Fairgrieve SD, et al. (2000) Population based, prospective study of the care of women with epilepsy in pregnancy. BMJ 321: 674-5.

Hiilesmaa VK, et al. (1985) Obstetric outcome in women with epilepsy. AM L Obstet Gynecol 152(5): 499-504.

Holmes LB, Wyszynski DF. (2004) North American antiepileptic drug pregnancy register. Epilepsia 45: 1465.

Lewis G. (2007) The confidential enquiry into maternal and child health (CEMACH). Saving mothers’ lives: reviewing maternal deaths to make motherhood safer – 2003-2005. The seventh report on confidential enquires into maternal deaths in the United Kingdom. CEMACH: London.

Meador KJ, et al. (2009) Cognitive function at three years of age after fetal exposure to antiepileptic drugs. The New England Journal of Medicine 360: 1597-1605.

Morrow JI, et al. (2006) Malformation risks of anti-epileptic drugs in pregnancy: a prospective study from the UK Epilepsy and Pregnancy Register. Journal of Neurology, Neurosurgery and Psychiatry 77(2): 961-5. 

Nelson KB, Ellenberg JH. (1982) Maternal seizure disorder, outcome of pregnancy, and neurologic abnormalities in the children. Neurology 32: 1247-54.

Richmond JR, et al. (2004) Epilepsy and pregnancy: an obstetric perspective. AJOG 190: 371-9.

Schmidt D, et al. (1983). Change of seizure frequency in pregnant epileptic women. Journal of Neurology, Neurosurgery and Psychiatry 46: 751-5.

Skills for Health. (2008) Long-term neurological conditions. NHS National Workforce Projects: London.

Stokes T, et al. (2004) Clinical guidelines and evidence review for the epilepsies: diagnosis and management in adults and children in primary and secondary care. Royal College of General Practitioners: London.

Vajda F, et al. (2004) Australian pregnancy register of women taking antiepileptic drugs. Epilepsia 45: 1466.

Viinikainen J, et al. (2006) Community-based, prospective controlled study of obstetric and neonatal outcome of 179 pregnancies in women with epilepsy. Epilepsia 47: 186-92.

Williams J, et al. (2002). Self-discontinuation of antiepileptic medication in pregnancy: detection by hair analysis. Epilepsia 43(8): 824-31.

Yerby MS, Cawthon L. (1994) Mortality rates in infants of mothers with epilepsy. Ann Neurol 36: 330.