Mothers in mind campaign

Nicole Crosby, women’s officer at Epilepsy Action, UK, looks at the issues faced by women with epilepsy who are thinking about starting a family, and describes the organisation’s Mothers in mind campaign.

Epilepsy is the most common serious neurological condition in the UK and it is estimated that 131,000 women with epilepsy are of childbearing age (aged between 12 and 50). Each year between 1,800 and 2,400 children are born to women with active epilepsy (Joint Epilepsy Council 2005).

Mothers in mind campaign

Epilepsy Action, the UK’s largest member-led epilepsy organisation, has launched Mothers in mind, a campaign urging health professionals to work in partnership with women with epilepsy who want to start a family, to establish a better quality of life for mother and child.

According to Professor Pamela Crawford, a consultant neurologist at York District Hospital, providing women and health professionals with relevant up-to-date information helps build a good relationship between them. This reduces the risks and increases the quality of life for both mother and child.

The charity wants to help ensure that women receive the most appropriate information about health issues in relation to epilepsy, contraception, pregnancy and parenting, and has produced a Mothers in mind booklet for women with epilepsy.

Both the campaign and the booklet aim to raise awareness of the issues affecting women with epilepsy. Women are advised to discuss all the options open to them with a health professional, in order to achieve good seizure control during pregnancy and pose the minimum risk to the unborn child.

The campaign addresses many of the health concerns raised by women with epilepsy, and those key issues are outlined here.

Fertility and epilepsy

There are many health issues for women with epilepsy to think about, and many women often worry about the effect their epilepsy, or anti-epileptic drugs (AEDs) taken to control their epilepsy, will have on their ability to have children and on unborn babies.

Women with epilepsy are thought to be at a slightly higher risk than women from the general population of developing polycystic ovary syndrome (a complex hormonal condition that can cause numerous follicles to grow in the ovaries). Other research shows that epilepsy may slightly reduce male and female fertility; however, these cases are often treatable.

Epilepsy and pregnancy

Many women will have read about the possibility of anti-epileptic drugs affecting unborn babies. The UK Epilepsy and Pregnancy Register (Morrow et al 2005) was started in December 1996 to monitor the risk AEDs pose to unborn babies. The results of the findings so far were published in September 2005 and have defined, more clearly, the risks of major congenital malformations (MCMs) posed to the unborn child by AEDs.

The results provide evidence that there is an increased risk of MCMs in babies of women taking AEDs. The study covers the relative risk of a number of AEDs, the use of single AEDs and different combinations of drugs, as well as the effects of different dosages.

For women in the general population, the risk of having a baby with an MCM is a 1 to 2% chance (one to two children in every 100 born). Women who do take AEDs have an average of around a 4% chance of having a baby with an MCM (Joint Epilepsy Council 2005).

Epilepsy Action welcomes the study as it shows that it is possible to try to minimise the risks to the babies of women taking AEDs by paying close attention to the particular drugs and combinations prescribed. The findings will help clinicians to look at the relative risks and work with women to choose the most appropriate AED regime for them.

Women with epilepsy should not stop taking their medication without consulting their general practitioner or epilepsy specialist first. Stopping medication without medical guidance could cause a change in seizure control. This may result in more problems than the risks associated with the drugs themselves, for example by causing injury to the mother and baby because of a fall.

Pre-conception counselling

Before trying for a baby, women with epilepsy are advised to seek
pre-conception counselling. This offers an opportunity to discuss the relatively small risk of epilepsy and AEDs affecting the health of an unborn child. It also provides an opportunity for an epilepsy specialist to work with the woman to plan and gradually implement any necessary changes to medication, to further reduce any risk to the woman and her future child.

Unplanned pregnancy

Women with epilepsy should try to avoid an unplanned pregnancy, as research has shown that any harm to the baby as a result of using AEDs occurs within the first three months. However, some AEDs reduce the effectiveness of various contraceptive and natural birth control methods (including the contraceptive pill, progesterone implants, progestogen injections, persona and rhythm methods, and the emergency contraceptive pill). This is something that health professionals must take into account when prescribing contraception to women taking AEDs.

Parenting

Parenthood leads to many questions about the impact of epilepsy on family life. Some parents worry about how and when to talk to a child about epilepsy; other parents worry about ensuring the safety of a child. What is important to remember is that many parents with epilepsy care successfully for their babies and children, and that help and advice are available. The Mothers in mind booklet gives practical tips on ensuring the safety of your child.

You can get further information about epilepsy (or request a copy of the Mothers in mind booklet) from the freephone helpline on 0808 800 5050 or by visiting www.epilepsy.org.uk

References

Joint Epilepsy Council. 2005. Epilepsy prevalence, incidence and other statistics. London: Joint Epilepsy Council

Morrow JI, Russell A, Gutherie E et al. 12 September 2005. ‘Malformation risks of anti-epileptic drugs in pregnancy: a prospective study from the UK Epilepsy and Pregnancy Register’. Journal of Neurology, Neurosurgery and Psychiatry.

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What is a major congenital malformation?

Some of the problems that may occur in babies who are born to mothers with epilepsy are classed as major congenital malformations. MCMs include abnormalities such as malformations of the spinal cord and spine, heart, ribs, bladder, sexual organs, and fingers and toes.

The risks of MCMs can be related to having epilepsy itself and to any AEDs that a woman is taking during pregnancy.

  • Women in the general population have a 1 to 2% chance of having a baby with an MCM.
  • Women with epilepsy, who do not take AEDs, have a 3.5% chance of having a baby with an MCM.
  • Women who do take AEDs have an average of around a 4% chance of having a baby with an MCM. Resources: New briefings and books

First published in Disability, Pregnancy & Parenthood international, Issue 53/54, Spring/Summer 2006.

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