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Statement on preconception counselling

Access to pre-conception counselling is vital to the future health of women with epilepsy and their unborn baby during pregnancy. Uncontrolled epileptic seizures in pregnancy increase the risk of maternal death. However, taking anti-epileptic drugs (AEDs) in pregnancy increases the risk of malformation and neurodevelopment impairments in the baby.

Once a woman discovers she is pregnant, important organs (for example the neural tube) have started to develop in the unborn baby. Making changes to her medication now, increases her risk of seizures and can’t reverse any malformations already formed in the unborn baby. Pre-conception counselling allows women to work with specialists to potentially reduce the risks posed to themselves and their future unborn child – before they conceive.

Referral to pre-conception counselling

Women with epilepsy of child bearing age should receive from their GP regular counselling on contraception, conception and pregnancy. GPs should refer women wanting to become pregnant, or those wanting to reduce the risk should they become pregnant, to pre-conception counselling services.

Women should also be able to request referral to pre-conception counselling through their epilepsy specialist, epilepsy specialist nurse or neurologist. In some areas of the UK a pre-conception service isn’t available - this is unacceptable given the risk to the health of the mother and unborn child.

Further information on the risks associated with pregnancy

Maternal deaths from epilepsy are rare in the UK. However the risk of maternal death is an estimated ten times higher in women with epilepsy than in women in the general population [1]. This might be due to some mothers not taking their AEDs during pregnancy (against their doctor’s advice). Often due to fears that their AEDs will harm their unborn baby. Failure to take AEDs increases the risk of seizures, and thus the risk of harm. Another reason suggested is that inadequate action is taken in response to worsening seizures during pregnancy.
Failure to take anti-epileptic medication, or the failure to control a person’s seizures might lead to status epilepticus or sudden unexpected death in epilepsy (SUDEP). Status epilepticus is an emergency event, as the seizure reduces the mother’s (and thus the unborn baby’s) oxygen intake. This can affect the health of mum and baby and may lead to death.

Uncontrolled, frequent seizures also increase the mother’s risk of sudden unexpected death in epilepsy (SUDEP).

Taking AEDs in pregnancy increases the risk of birth malformations and neurodevelopment impairments in the unborn baby. However the risk is variable depending on the type and dose of AED taken, and the number of AEDs a person is taking. This means a pre-conception specialist might suggest making changes to a woman’s medication to reduce the risks to a potential unborn baby, without compromising her seizure control - before they start trying for a baby.

Background

Evidence from the UK epilepsy and pregnancy register [2] has shown that the type and dose of AED taken by the mother during the first trimester (first twelve weeks) impacts on the risk of major congenital malformation (MCMs) in her unborn baby. The background rate of MCMs in the UK is an estimated 1.3 [3] – 2.1 [4] per cent of babies born (between one and two babies in every 100 born). The rate of MCMs in babies exposed to maternal AEDs was calculated at:

  • 2.4 per cent of babies exposed to carbamazepine and no other AED. 
  • 2.4 per cent of babies exposed to lamotrigine at a daily dose below 400 mg and no other AED. 
  • 5.9 per cent of babies exposed to lamotrigine at a daily dose above 400 mg and no other AED. 
  • Five per cent of babies exposed to sodium valproate at a daily dose below 1,000 mg and no other AED. 
  • 9.1 per cent of babies exposed to sodium valproate at a daily dose above 1,000 mg and no other AED.
  • 8.9 per cent of babies exposed to sodium valproate and another AED. 
  • 4.2 per cent of babies exposed to two different AEDs (but not sodium valproate).

Exposure to maternal sodium valproate has also been associated with a higher incidence of neurodevelopment impairment. In particular in the work of Liverpool and Manchester Neurodevelopment Group and Neurodevelopmental Effects of Anti-epileptic Drugs (NEAD) study group.

Replacing one AED (for example sodium valproate) with another AED (that has been shown to pose less risk the unborn baby) at a later age or when the woman wants to plan a family is not always achievable. Pregnancy could occur before the other AED is adopted (more than half of all pregnancies are unplanned [5]). Potential social and financial consequences of attempting to switch AEDs could also create a barrier. For example there is a risk of increased seizures and side-effects while changing AEDs. This may impact on educational studies, employment, personal relationships, independence and the ability to hold a driving licence.

Conclusion

Pre-conception counselling is a vital service. It enables women to potentially reduce the risk of having a baby with a malformation while at the same time working towards achieving optimum seizure control.

February 2012

References

  1. In utero antiepileptic drug exposure – fetal death and malformations. K J Meador, G A Baker et al NEAD study group. Neurology 2006;67:407-412
  2. Morrow J et al. Malformation risks of antiepileptic drugs in pregnancy: a prospective study from the UK Epilepsy and Pregnancy Register. 
  3. Office for National Statistics National Congenital Anomaly System
  4. British Isle Network of Congenital Anomaly Registers (Binocar) 2011 
  5. Fairgrieve SD Jackson M Jonas P. Population based prospective study of the care of women with epilepsy in pregnancy. BMJ 2000;321:674-5.

Further reading

  • Epilepsy Action. Planning a baby http://www.epilepsy.org.uk/info/women/having-baby/planning
  • Morrow J et al. Malformation risks of antiepileptic drugs in pregnancy: a prospective study from the UK Epilepsy and Pregnancy Register. J Neurol. Neurosurg. Psychiatry online 12 Sept 2005 doi:10.1136/jnnp.2005.074203.
  • Baker G, Bagshaw J, Clayton-Smith J et al. (Epilepsy Guidance Group). Primary Care Guidance for the management of women taking anti-epileptic drugs. The Royal Society of Medicine Press Limited 2011.
  • Bromley RL, Mawer G, Clayton-Smith J et al (Liverpool and Manchester Neurodevelopment Group). Autism Spectrum Disorders following in utero exposure to anti-epileptic drugs. Neurology 2008;71:1923-24
  • Jentink J, Loane MA, Dolk H et al (EUROCAT). Valproic acid monotehrapy in pregnancy and major congenital malformations. The New England Journal of Medicine 2010;362:2185-2193.
  • Meador KJ, Baker GA, Browning N et al (NEAD study group). Cognitive function at three years of age after fetal exposure to anti-epileptic drugs. The New England Journal of Medicine 2009;360(16):1597-1605.

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