My epileptic seizures can hurt my pregnancy. I wrote a lullaby to soothe my baby and my fears

This First Person column is the experience of Julianne Hazlewood who is a CBC journalist and lives with epilepsy. For more information about CBC's First Person stories, please see the FAQ.

I've often thought of myself as a cat with nine lives. There's been so many times I've almost died from seizures, starting with the first one I had when I was 14.

It happened at the end of the school year on a hot, humid night. I fell asleep thinking I needed to get up early the next morning for choir practice.

Instead, I woke up in an ambulance. My mom was sitting in the corner, her eyes wide with terror.

She was nearly asleep when she heard a faint noise in the house. Something probably fell, she thought, and it could wait until morning. But after going back and forth, she finally walked towards the bathroom.

My mom found me seizing on the ceramic floor. At first she froze, but then she lurched into action once she realized I was choking on my tongue. My convulsing body had turned blue, she later told me.

She put me on my side so I could breathe and called 911. My mom saved my life that night. 

I would soon be diagnosed with epilepsy.

More than two decades later, I'm pregnant for the first time. I'm 37 and I feel complete joy and anticipation to meet my child. But I also live in fear. 

I rely on an anticonvulsant medication to avoid seizures. The chance of seizures can increase for women with epilepsy who are pregnant, according to research. One of the reasons for this is the physiological changes during pregnancy, which can affect how the body responds to epilepsy medication and makes it less effective. A drop in essential seizure-control medication can put mom and baby at risk.

The fear of collapsing and seizing has lived inside me since my first seizure and diagnosis. Being pregnant brings that fear to the fore. The possibility of having a seizure and that affecting the baby's health or losing the baby underpins the joy I feel. It haunts me.

So when my neurologist described The Lullaby Project, it felt like a glimmer of hope — a way to channel my deepest fears into something beautiful like a song for my baby. 

The program is run through Roy Thomson Hall and Massey Hall in Toronto. It approaches music as medicine. It's designed to empower participants by giving them an outlet for expressing their experiences and connecting with themselves, others and their babies through music.

My neurologist Dr. Esther Bui has collaborated with the Lullaby Project and helped adapt the program for women with epilepsy who are pregnant.