Healthy births and epilepsy

In DPPI journal, issue 53/54, we featured the Mothers in Mind campaign, launched by Epilepsy In DPPI journal, issue 53/54, we featured the Mothers in Mind campaign, launched by Epilepsy Action, UK, in 2006. Here, Nicole Crosby-McKenna, development officer for women at Epilepsy Action, provides an update on the next stage of the campaign.

In September 2008, Epilepsy Action launched Healthy births, the second stage of its Mothers in Mind campaign, following the results of its Ideal World survey.

This survey revealed that women were still being refused access to preconception counselling and adequate healthcare in pregnancy. Furthermore, several areas where the care of pregnant women with epilepsy could be significantly improved were revealed in the report Saving mothers' lives (Confidential Enquiry into Maternal and Child Health 2007).

Preconception counselling

The campaign is fully supported by Professor Pamela Crawford, a consultant neurologist at York District Hospital. She believes it is important for women with epilepsy to plan their pregnancies, as simple measures can decrease the risks associated with pregnancy and epilepsy. All women with epilepsy should be referred to a professional with an in-depth knowledge of epilepsy for specialist advice about pregnancy (known as preconception counselling).

Most women with epilepsy have healthy pregnancies and healthy babies. However, women with epilepsy need to discuss the small increased risk of problems in pregnancy. These include premature labour, increased seizures or their baby having a malformation.

Preconception counselling also enables women to discuss with their healthcare professionals their current anti-epileptic drugs (AEDs) and seizure frequency. They can then examine the risk of having a baby with a malformation associated with their AEDs. They can also discuss, if necessary, the possibility of withdrawing their AEDs and the associated risks of uncontrolled seizures. For some women it may be possible to change from their current AED to another AED associated with a lower risk of birth malformation.

Most women with epilepsy have healthy pregnancies and healthy babies.

Pamela Crawford says “;Women need to work in partnership with healthcare professionals to make informed choices regarding managing their seizures. The aim is to achieve good seizure control during and after pregnancy. Under no circumstances, however, should women stop taking AEDs without consulting their GP or health professional”;.

Obstetricians and midwives

Some mothers with epilepsy said that they believed their obstetric health professionals were not well informed about epilepsy in pregnancy. This made them feel anxious about whether the health professionals could look after them and their babies properly, and left them feeling frustrated when questions were left unanswered.

Many healthcare professionals may have little previous experience of caring for women with epilepsy during pregnancy. To promote better healthcare practice in pregnancy, Epilepsy Action has created a Mothers in mind obstetrics resource pack especially for health professionals working in an antenatal setting.

This resource pack was created by a working party of epilepsy specialist midwives and specialist nurses and was reviewed by Pamela Crawford. It shares the experiences of epilepsy professionals and provides access to information on epilepsy in pregnancy.

Health visitors and community health professionals

Mothers with epilepsy do not receive adequate support or information about how to keep their child safe should they have a seizure (Bagshaw, Crawford and Chappell 2008).

Epilepsy Action worked with leading experts to create a Mothers in mind resource pack for health visitors and community practitioners. This resource provides health visitors with up-to-date information about epilepsy, breastfeeding and child safety. It will enable them to better support new parents with epilepsy.

Pregnancy diaries

The campaign also sought to extend the support Epilepsy Action provides to women and new parents with epilepsy. The information booklet Mothers in mind was updated, and throughout September the Epilepsy Helpline focused on helping women to become pregnancy aware. The helpline advisers provided women with information about epilepsy and pregnancy, and told women where they could obtain further advice and support. This could include a preconception counsellor or the UK Epilepsy and Pregnancy Register.

To enable women and parents with epilepsy to support each other in pregnancy and parenthood, Epilepsy Action launched The pregnancy diaries.

In the diaries, three new mothers with epilepsy wrote about their own personal experiences of planning a family, pregnancy and parenthood. Nicola, Ingrid and Jennifer were very open and honest, writing about their own fears and the personal ups and downs of their pregnancies. The pregnancy diaries is an online ‘living‘ resource, so readers can become part of the diary by adding their own experiences to it.

Rights to healthcare

The epilepsy specialist nurses and midwives who have made this campaign possible firmly believe that pregnancy and parenthood is normal, and mothers with epilepsy have a right to expect safe and reliable healthcare that meets their individual needs.

Reference

Bagshaw J, Crawford P and Chappell B. 2008. Problems that mothers with epilepsy experience when caring for their children. Seizure 17, 42–48.

Confidential Enquiry into Maternal and Child Health (CEMACH). 2007, Saving Mothers Lives. London: CEMACH.

Extract from The pregnancy diaries

Nicola S: Third trimester

I am starting to think about the birth now. No home birth for me! I'm worried that, since stress and tiredness trigger my seizures, I might have one during labour. I talk to the antenatal consultant about a potential elective caesarean but it is dismissed out of hand with little explanation. I leave in tears, and determined to get a second opinion.

The appointment for the second opinion is more successful. The doctor carefully explains that the incidence of seizures during labour is virtually unknown, and reassures me that the necessary emergency procedures will be in place should this very unlikely event occur. She also gives me a prescription for some extra medication to take during labour to make it even less likely. So it looks like it's going to be a vaginal birth — I'm so glad I decided to get a second opinion. It made so much difference to talk it through with a sympathetic professional, even if the decision was the same.

The Mothers in mind obstetrics resource pack, Mothers in mind resource pack for health visitors and community practitioners and The pregnancy diaries can be downloaded free at www.epilepsy.org.uk/mothersinmind or obtained from the epilepsy helpline: freephone 0808 800 5050 or e-mail: helpline@epilepsy.org.uk

First published in Disability, Pregnancy & Parenthood, issue 64, Winter 2008/2009.

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