While most women with epilepsy give birth safely, healthcare professionals must do more to control the condition in pregnant women, according to new guidance published today at the Royal College of Obstetricians and Gynaecologists World Congress in Birmingham.
This is the first guideline on epilepsy in pregnancy and will provide clarity for healthcare professionals and women with the condition.
Epilepsy is one of the most common neurological conditions in pregnancy, with 1% of the UK population affected. Around one-third of women with epilepsy are of child-bearing age, and an estimated 2,500 babies are born to women with the condition each year. While most women with epilepsy have healthy pregnancies and healthy babies, having frequent seizures during pregnancy can be harmful to both mother and baby and the risk of maternal death is increased ten-fold. Women with epilepsy should therefore be treated by a specialist healthcare team throughout their pregnancy.
From 2009 to 2013, 21 women died during pregnancy as a result of epilepsy and the 2014 MBRRACE-UK report highlighted the urgent need to develop national guidance to improve care for pregnant women with epilepsy. In the majority of cases, the deaths occurred because seizures were poorly controlled. Women were often not given any preconception counselling and were not cared for by an epilepsy nurse or specialist during their pregnancies.
Research has shown that children born to mothers who take anti-epileptic drugs (AEDs) during pregnancy, in particular sodium valproate, are at an increased risk of physical and developmental problems including spina bifida, heart defects and autism. However, the guideline emphasises that stopping AEDs completely or altering the dose can worsen seizures and pose a serious risk to both mother and baby. Women are advised to seek advice from their GP and/or specialist team before conception or as soon as they are aware that they are pregnant. The lowest effective dose of the most appropriate AED should be prescribed.
The guideline also advises women to take a higher dose of folic acid (5mg) to reduce the risk of their baby developing spinal defects. Adequate pain relief and appropriate care and AEDs to minimise the risk of seizures during pregnancy, such as insomnia, stress and dehydration, are also vital. Women at risk of seizures during labour should give birth in consultant-led units with facilities for one-to-one midwifery care and a special care baby unit should extra care be needed.
Mothers should also be well supported in the postnatal period to ensure that seizure triggers such as sleep deprivation, stress and pain are minimised. If the AED dose was increased in pregnancy, it should be reviewed within 10 days of delivery to avoid side effects to the mother from exposure to a high dose. The guidelines also recommend women be screened for signs of depression and anxiety in the postnatal period.
Shakila Thangaratinam, Professor of Maternal and Perinatal Health and consultant obstetrician at Barts and The London School of Medicine and Dentistry and lead author of the guideline, said:
“As emphasised in the 2014 MBBRACE-UK report, women with epilepsy require multidisciplinary care throughout their pregnancy, and healthcare professionals need to be aware of the small but significant increase in risks.
“While most women who have epilepsy remain free of seizures throughout their pregnancy, some may have more seizures if they are pregnant. This is usually because they have stopped taking AEDs or are not taking them regularly. Pregnancy itself or tiredness can also increase the number of seizures.
“It is important that these women receive preconception counselling, meet with an epilepsy specialist, and are monitored closely for seizure risk factors. Their adherence to anti-epileptic drugs, seizure type and frequency during the antenatal period should also be closely assessed.”
Professor Alan Cameron, RCOG Vice President for Clinical Quality, said:
“Care of pregnant women with epilepsy has remained fragmented over recent years. This is the first ever national guideline on epilepsy and pregnancy and we hope it will support healthcare professionals to ensure that women receive the appropriate counselling before, during and after pregnancy and are aware of the risks to themselves and their baby and the benefits of appropriate treatment. Such a strategy will empower women to make informed decisions about their care during pregnancy with the support from a specialist team.”
Clair Cobbold, 31 years old - Surrey
Mother of two, Clair Cobbold, says she was made to feel like a “complex case” when she was pregnant with her first child. “I was given very little choice about my birth plan, which was heavily medicalised to prevent me from having a seizure during labour. I went on to have a very traumatic birth, which included a forceps delivery, and left my husband and I with post-traumatic stress. We were so shaken by the experience that we considered adoption for a second child, but after receiving advice and support from Epilepsy Action, we decided to try for another baby. This time the experience was very positive, as I was given much more choice and control. By talking with an epilepsy specialist midwife, I was able to control my anxiety and stress, and had a “text book natural birth.”
Faye Waddams, 30 years old – Loughton
Faye Waddams from Loughton says her epilepsy became uncontrollable when she fell pregnant last year. “I was hospitalised several times after seizures, and my condition was so bad that I had to see a neurologist every month during my pregnancy. However, by the time I was induced I had a detailed birth plan and strong support team. My midwife was completely aware of my condition, I was given appropriate medication during labour to help with the epilepsy, and I had an early epidural to cope with the pain. I strongly believe that having good support made all the difference.”
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The RCOG World Congress is being held from 20-22 June 2016 at the International Conference Centre (ICC) in Birmingham. Over 2,000 colleagues from around the world will hear leading experts in the field of Obstetrics and Gynaecology deliver an exciting, cutting-edge scientific programme.
New patient information ‘Epilepsy in Pregnancy’ is also published today.