There is one thing that expecting parents want more than anything else. Whether their baby bump turns out to be a boy or a girl, whether he or she has blue or brown eyes, all parents just want a healthy baby.
The news of a pregnancy is often met with joy and delight, but often parents feel some measure of worry for their baby alongside their excitement.
When epilepsy is in the mix for a mother-to-be, those worries are likely to be heightened. There are a lot of considerations that may cross a woman’s mind when she is thinking about her pregnancy and her baby’s wellbeing. Anything from managing triggers and avoiding seizures to preventing injuries or planning the birth could be important matters she may be thinking about.
But there is another important issue that should be in the mix, and it is one which may not be getting the awareness that it needs.
A need for awareness
Three epilepsy charities set out to gauge the level of awareness about sodium valproate. They wanted to find out whether women taking the epilepsy medicine knew of the risks it poses if taken during pregnancy.
Sodium valproate, often prescribed under the names Epilim, Epival, Episenta, Convulex and Orlept, is currently the third most-prescribed epilepsy medicine. For many women, it is very effective in reducing or stopping epileptic seizures, and for some, it may be the only medicine that works.
However, sodium valproate has also been associated with an increased risk of harm to babies if taken during pregnancy. The Medicines and Healthcare products Regulatory Agency (MHRA) is an agency of the Department of Health, which ensures that medicines are suitably safe. According to the MHRA, exposure to sodium valproate in pregnancy could put around four in 10 babies at risk of developmental problems. As well as this, one in 10 babies could be at risk of birth defects, the MHRA says.
Epilepsy Action, Epilepsy Society and Young Epilepsy surveyed 2,788 women with epilepsy aged 16-50 across the UK. Of the surveyed women, just under half (48%) were not aware of the risks of taking sodium valproate during pregnancy.
What is perhaps even more worrying, is that of women who were actually taking sodium valproate, one fifth – 20% – were not aware of the risks.
Over the years, there has been a large number of pregnancies with complications because of lack of awareness about the risks of sodium valproate. In 2016, there were news reports saying that 10,000 pregnant women in France were prescribed sodium valproate between 2007 and 2014. The reports added that the situation was suspected to have been similar for the UK between those dates.
Over the years, some heart-breaking cases have been reported in the news, showing some of the harmful effects of sodium valproate taken during pregnancy. In 2013, BBC Panorama ran a documentary about the effects of prescription medicines during pregnancy entitled The Truth About Pills and Pregnancy. The programme was made with the help of campaigning organisation Independent Fetal Anti Convulsant Trust (INFACT). It featured a woman with epilepsy who had had two children born with foetal valproate syndrome. The condition was not diagnosed in her first child until she was halfway through her second pregnancy.
Also in 2013, the Mail Online published the story of Karen Buck, who has epilepsy and took sodium valproate during pregnancy. Her daughter Bridget was born with a number of severe problems including brain damage and spinal defects.
These women, like many others, were not aware of the damaging effects sodium valproate could have on their babies. It meant that they were not able to make an informed choice about their care and pregnancy.
An informed choice
This is something the charities want to tackle. They want women to understand their medicine. Where sodium valproate is the only medicine that works, the charities want women to be able to navigate having a baby in a way that minimises risks.
The charities believe that healthcare professionals should be leading the conversations with their female patients about the risks of taking sodium valproate during pregnancy. However, they also want to encourage women of childbearing age taking sodium valproate to speak to their medical professionals and discuss their options. The organisations stress that women should continue to take their medicines unless otherwise advised by their doctor. If women have become pregnant while taking sodium valproate, they must also continue to take their medicine and seek urgent advice from a doctor. This is because stopping medicines could cause seizures, which could also cause harm to the mother and baby.
The survey revealed that over a quarter of the women taking sodium valproate (27%) did not have the risks to pregnancy explained by their doctor. The charities are urging doctors to speak to women and girls of a childbearing age about the risks of sodium valproate. They want to highlight the importance of these conversations happening before women become pregnant.
The MHRA has launched a toolkit to help medical professionals inform women about the risks of sodium valproate, which can be found on their website. The charities are also urging the Department of Health to continue their work to help women make informed decisions about their epilepsy care.
Epilepsy Action’s chief executive, Philip Lee, said: “Pregnancy is a complex journey for any woman. But for women with epilepsy there can be additional challenges along the way. Pregnancy can impact on seizures or make medicines less effective. This can be dangerous for a mother and her unborn baby. We also know some epilepsy medicines, such as sodium valproate, can cause developmental problems or birth defects.
“It is therefore crucial that women with epilepsy get the right information about their care and treatment. This is vital in order to help them navigate these challenges and have healthy pregnancies. Yet the figures suggest that more conversations about the potential risks involved need to take place. This would mean that women with epilepsy can make informed choices, ideally before they conceive.”
The right advice
|Alison with her two sons|
The role of medical professionals supporting women with epilepsy through pregnancy is invaluable. When doctors discuss the options with women, the outcomes for them and their babies can be completely different. This is what happened with 37-year-old Alison. Shortly after giving birth to her first son in 2012, Alison was diagnosed with a brain tumour. She had surgery and radiotherapy, but began to have focal seizures, and was later diagnosed with focal epilepsy.
After trying a few different medicines, Alison’s consultant neurologist put her on sodium valproate (Epilim), which instantly controlled her seizures. At this stage, the consultant made it very clear that she should not get pregnant while she was taking this medicine. He explained the risks to pregnancy that taking sodium valproate could have and recommended an effective birth control.
When Alison and her husband Craig decided that they wanted to have another baby, they sought advice from Alison’s epilepsy specialist. He advised Alison that the best course of action for her was to be weaned off sodium valproate for a year and to start taking the medicine levetiracetam instead. He also told her to take a higher dose of folic acid (5mg) than the recommended dose for women without epilepsy.
|Alison and her sons at Alistair's birthday|
Alison became pregnant 18 months later. She said: “Getting the right advice from my neurologist made such a difference and completely normalised the [second] pregnancy. I was on 1,500mg of Keppra (levetiracetam) throughout the pregnancy and remained seizure-free. My Keppra levels were tested almost monthly too to ensure they stayed stable. It all turned out okay eventually and Alastair was born a perfect little boy and healthy in every way.
“Every pregnancy carries risks, but women with epilepsy really need to be aware of the potential risks before they conceive. They need to discuss these at length with their consultant, ask what they need to do and follow it.
“I have heard many stories about women who have stopped taking their medicines when they find out they’re pregnant, which is so dangerous. Before you can look after a little one, you need to make sure you look after yourself first.”
The findings from the survey have shown that there needs to be more awareness still about the effects of sodium valproate on pregnancies. Women with epilepsy of childbearing age taking this medicine should seek advice from their doctor before getting pregnant, and discuss their options. Equally, healthcare professionals prescribing this medicine should be very clear about the risks the medicine poses to pregnancy.
All any parent wants is a healthy pregnancy and a healthy baby. Alison’s experience can – and should – be the experience of every woman with epilepsy considering pregnancy.
For more information about epilepsy and pregnancy, visit the Epilepsy Action website.
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