Why women with epilepsy must be ‘empowered’ to become experts on their condition during pregnancy

Clair Cobbold, our Information Officer on the Brain Injury Hub, has spoken about her experience of epilepsy during pregnancy in an article in the Huffington Post. 

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Well done to Clair in raising awareness of this important issue which will help many other women who have epilepsy and may be thinking about starting a family.

  From the Huffington Post Pregnant women with epilepsy are faced with worries that go beyond morning sickness and heightened hormones. They have to consider the likelihood of seizures, whether their medication poses any risk to their baby and the potential risk of birth defects. Clair Cobbold, who is mum to Riley, three, and Benji, six months, has temporal lobe epilepsy. She said she felt incredibly lonely during her first pregnancy, which wasn’t helped by the added fear of what else could go wrong. “You have all the normal concerns about being a mum and how it can change your life, but you also are given information about epilepsy, pregnancy and birth defects,” Clair told HuffPost UK. “It’s quite scary and at my 12-week scan I was so scared that something was going to be wrong with the baby because of all the information I had read.” “Throughout my pregnancy I just did everything my doctors told me - I was being seen by a London epilepsy team, who would write to my local team, but my local team didn’t know much about epilepsy at all,” she explained. “I think I just didn’t have much confidence with any of it.”
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Clair, her husband, Rich and Riley and Benji
During Riley’s birth, Clair was given an anti-epileptic drug, but unfortunately this caused her labour to slow down. “It ended up being a very traumatic birth because it was slowed down by the drug,” she added. “I had to have a forceps delivery and suffered with PTSD after.” Clair found support through the Epilepsy Society after the birth of her first child and it was then she met midwife Kim Morley. However by this point, Clair said she had already decided to go down the route of adoption, as she felt she couldn’t handle going through pregnancy and birth again. “Kim told me pregnancy didn’t need to be medicalised, especially if your epilepsy is well-controlled and when I explained the medications I had been given she told me they slowed down labour,” Clair said. She was told if she were to fall pregnant again, she should call on the support of an epilepsy midwife who would be more knowledgable about her condition and support her concerns. “I did fall pregnant again and for my second birth, I saw Kim and felt much more relaxed, with a chance to enjoy my pregnancy,” said Clair. “If I had been sick, I would call and ask her what to do and having that support was useful. With epilepsy you just need someone who knows the answer, it gives you confidence.” Morley said her main concern for pregnant women who have epilepsy is that many feel “disempowered” during the nine months.
Riley_and_Benji
Riley and Benji
“I do everything I can to pass on my knowledge to empower women to become experts in managing their own condition,” she explained. “To reduce fears that surround epilepsy, it’s important for women to learn more about their health condition. “Epilepsy support groups have a wealth of support devices to enable women to understand what epilepsy is, how their treatment works and support mechanisms and opportunities. “This includes medication aids, as forgotten tablets are one of the leading causes of seizure recurrence.” Morley also suggested women should ask their midwife or epilepsy specialist to improve their self management by working together to form a plan for how they would like their pregnancy/birth to go, as well as how to manage risks. “Putting the woman in charge of this plan takes away the risks associated with delay accessing professional advice,” she said. “Encouraging the woman to share the knowledge of her epilepsy and management of seizures with family and friends helps her wider support network in the event she were to experience a seizure.” Since giving birth to her second child, Clair said speaking to other mums who have epilepsy has been a huge support for her. “Women need to know there is support out there and they just need to have the confidence to talk to them about it,” she added. Click here for more information on epilepsy during pregnancy.  
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