“The moment I held my babies for the first time was surreal. Yet with my son, I remember not feeling right[…]Thankfully, I didn’t have a seizure, but those first few moments with my son were stolen from me because I didn’t trust my body, because of my epilepsy.”
– Kathryn’s experience
This week is Epilepsy Awareness Week. We spoke to Kathryn Burrell, who is a PPIE member on the Epi-Safe – Improving safety for pregnant women with epilepsy and their children project (University of Liverpool), about her experience as a new mum with epilepsy. We asked her for the advice she would give to other women and birthing people who have epilepsy. This blog also shares insights from the new NHS England Maternal Care Bundle, and Baby Lifeline Training’s Improving Outcomes for Those with Comorbidities in Pregnancy course.
Kathryn’s Experience
The fears of bringing baby home
“My anxious mind went to a lot of worst-case scenarios in those first few weeks home. My seizures occur during sleep or in the first two hours after waking, and two of my biggest triggers are sleep deprivation and stress – factors that are unavoidable when parenting a newborn. There was no way of knowing of how my epilepsy would respond.
Could I have a seizure in the night when I’m feeding my baby and drop them? Could I have a seizure unexpectedly in the middle of the day because my sleep pattern is non-existent? ‘How am I going to get through this?’” Kathryn
Kathryn was given generic advice such as not to bath her baby on her own, to put baby in a car seat when she used the stairs, and to do nappy changes on the floor. She said that many of these strategies were easy to adopt, but some things weren’t. Patient-centred care would have given her more confidence, and she had to figure many things out for herself.
“I wish that the advice we had was more specific to me, my type of epilepsy, and my specific risk factors, because I am capable of looking after my children” she said.
Breastfeeding: guilt if I do, guilt if I don’t
“I am so glad that more research is being done into breastfeeding and ASMs, but for me, it’s been four years since having my eldest, and the worry that my medications could have affected her still linger in my mind. I feel such sadness for women who felt they had to choose not to breastfeed due to lack of information.”
Kathryn felt that there wasn’t enough tailored information for women with epilepsy and breastfeeding. Breastfeeding both of her children came with the caveats of potential exacerbation of sleep deprivation, more physical stress on her body, and exposing her baby to anti-seizure medications (ASMs) in breastmilk.
Kathryn told us that the advice she was given when leaving the hospital was vague, and this made her worry.
“In hindsight, all I really needed was someone just to tell me, practically, what [to look out for], and reassure me to trust my instincts.”
Feeling lost by reduced clinical support once baby was born
“It feels like pregnancy care is so much about the woman, especially for women with epilepsy where our high-risk pregnancies are carefully monitored, yet when baby is born, care for the mother disappears, and suddenly we’re on our own.”
Throughout pregnancy, Kathryn had regular blood testing to monitor the levels of her ASMs, and had to increase her dosage on multiple occasions. Post-birth, it was no longer clinical practice to continue with blood testing, but without this she stayed on the higher dose indefinitely. Kathryn felt like there was very little clinical support during this time.
Kathryn’s messages for women and birthing people with epilepsy:
- Utilise the care that is out there. Midwives, epilepsy nurses, infant feeding teams, health visitors are there to support you.
- Be open. Share your concerns, share the details of your epilepsy, make a plan that is tailored to you. There is no ‘one size fits all’ with epilepsy You are not a burden for prioritising your own and your baby’s health.
- Be prepared. Request a list of contacts who you can go to if you have problems in those early days. Any concerns surrounding medications, seizure changes, breastfeeding; find out who you should call, day or night.
- Ensure there is care after your birth. Request a follow-up from your neurologist or epilepsy nurse a few weeks after you have given birth to assess your seizure control, potential medication changes and general wellbeing throughout your post-partum period.
- You are not alone. Join support groups of like-minded mothers – because you are not alone. There are multiple epilepsy charities across the UK who can point you in the right direction for the support you need.
National Focus on Epilepsy
NHS England’s new Maternal Care Bundle includes epilepsy in pregnancy as one of five priority areas for improving maternal safety.
It highlights the need for women and birthing people with epilepsy to have timely specialist support during and after pregnancy, including postnatal medication review, seizure-risk planning, breastfeeding advice and clear handover between maternity, neurology, primary care and community services.
What you should expect with your care
Women and birthing people with epilepsy should receive:
- Tailored advice about breastfeeding safety, rather than being discouraged from breastfeeding by default.
- Ongoing specialist, multidisciplinary support throughout the postnatal period, rather than care ending at birth.
- Postnatal care which includes a review of seizure control, optimisation of anti-seizure medication (including in relation to infant feeding), and clear follow-up with neurology or maternal medicine teams where needed.
- Support to make informed decisions about their ongoing health and future reproductive plans.
Key Takeaway: The Early Postnatal Period is Important
For midwives and other healthcare professionals, the Maternal Care Bundle reinforces the importance of not seeing epilepsy care as ending once the baby is born. The early postnatal period is described in the Maternal Care Bundle as one of the “highest risk times for seizure exacerbation due to rapid hormonal shifts, fatigue, and medication changes”. It is therefore a key time to check that women have a clear plan, know who to contact, and have practical support around medication, sleep, feeding and safety at home.
The bundle sets a clear expectation that care should be individualised, specialist-led, and extend into the postnatal period, where feeding decisions are made.
Top tips for midwives and healthcare professionals working with pregnant women and birthing people with epilepsy from Baby Lifeline Training’s Improving Outcomes for Those with Comorbidities in Pregnancy course:
- Get to know your patient and their epilepsy. What type of seizures do they have? What are their triggers? What safety risks are they worried about?
- Be prepared with information and advice.Lots of women may want to know about risks related to medication, and want to talk about how epilepsy may impact on labour and breastfeeding.
- Tailor advice to their situation. Speak to them about strategies for lowering risk that are relevant to their family and their situation.
- Ongoing care is important. Monitor their drug levels, and speak to them about any adverse effects, sleep, feeding and future planning.
Useful resources include:
- www.womenwithepilepsy.co.uk/pregnancy-toolkit/
- www.epilepsyandpregnancy.co.uk/
- www.epilepsysociety.org.uk
- www.epilepsy.org.uk/info/women
Thank you to Kathryn Burrell and Ngawai Moss, and the Improving Outcomes for Those with Comorbidities in Pregnancy team, for their contributions to this blog.