From Hospital to Home: Becoming a Mother with Epilepsy
- Ngawai
- 5 days ago
- 4 min read
A personal reflection from Kathryn Burrell
The moment I held my babies for the first time was surreal. Yet with my son, I remember not feeling right. I’m a metre from the ground on this hospital bed, I can’t hold my baby when I feel like this. 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.
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?
Generic advice I was given for post-birth was not to bath baby on your own, put baby in a car seat when you use stairs and do nappy changes on the floor. While some of this was easy to adopt, much of it wasn’t. I wish that the advice we had was more specific to me, my type of epilepsy, and my specific risk factors. Patient-centred care is far more supportive than generic guidelines, and it would have given me more confidence too. There are ways to make things safer, and most of them I figured out myself – because I am capable of looking after my children.
Breastfeeding: guilt if I do, guilt if I don’t
I breastfed both my children and this was incredibly important to me, but I had to acknowledge the caveats – potential exacerbation of sleep deprivation, more physical stress on my body, and exposing my baby to anti-seizure medications (ASMs) in breastmilk. I spent a long time weighing up risks and benefits.
But I still feel I did not have enough information.
If I chose to breastfeed, why would I willingly expose my babies to more ASMs? If I chose not to breastfeed, why would I deprive my baby of nutrients that only breastmilk can provide? When I chose breastfeeding, sadly the only reassurance I had was that my babies would be getting less ASMs in breastmilk than they did in utero. 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.
Because I chose to breastfeed, before I headed home with my babies I was told to monitor for a rash or excessive sleepiness, as this could indicate my baby is having a reaction to my ASMs. I had never had a baby before, and every baby is different, so I had no way of knowing what excessive sleepiness was. With my eldest, I constantly checked with midwives, health visitors and GPs that my daughter’s sleep pattern was ok. In hindsight, all I really needed was someone just to tell me, practically, what excessive sleepiness looks like in a newborn, and reassure me to trust my instincts.
Feeling lost by reduced clinical support once baby was born
Throughout pregnancy I had regular blood testing to monitor the levels of my ASMs. I experienced absence seizures whenever my levels dropped, and I had to increase my dosage on multiple occasions. Post-birth, it was no longer clinical practice to continue with blood testing. As my hormones would be fluctuating and my triggers at an all-time high, it was sensible for me to stay on the higher dose, but without blood testing, it meant I stayed on this dose indefinitely. And so I did, for two years. Then, when I wanted to have another baby, my dosage was too high, and I had to carefully reduce it, hoping it wouldn’t cause breakthrough seizures.
Reducing it felt like a risk that could have been avoided. Then, after having my son, I had increased my dosage even more and a few weeks after giving birth I experienced signs of toxicity. I remember holding my son and nearly falling to the floor because my dizziness became so severe. Unfortunately, the clinical support for me was non-existent at this point, and I made the decision to reduce my medication myself.
I just wish I could have called someone, just like I could with my health visitor, for advice there and then.
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. We deserve to enjoy those first moments with our newborn knowing that help is readily available.
