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

White Coat Black Art26:30ENCORE: Pregnant with epilepsy

The CBCs Julianne Hazlewood takes us on a familiar journey that for her is filled with uncertainty and peril. Julianne is in the late stages of pregnancy. She also has epilepsy. For additional support, she joined a research program called The Lullaby Project. It paired her with a musician to help her write and record a song to soothe her baby, and her fears.

This First Person column is the experience of Julianne Hazlewood who is a CBC journalist and lives with epilepsy. This column was originally published in January. 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.

The joy and fear through pregnancy

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 possibility of having a seizure and that affecting the baby's health or losing the baby underpins the joy I feel.- Julianne Hazlewood

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.

Music as medicine

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.

As one of those women, I worked with a musician over the span of several months to collaborate, write and record a song for my baby.

I met artist Liz Lokre for the first time at her jam space. Before we started playing with chord progressions and writing lyrics, I told her my story that for years, I didn't accept my epilepsy. That as a teenager, I refused to wear a medical alert bracelet because I didn't want anybody to know. That my seizures were out of control in my early 20s. That at first it was a seizure a week, then I started having several seizures a day.

I told her my body felt like a kaleidoscope of motion the uncontrolled motions of my body while seizing paired with the motion of moving across the country as a journalist.

I described my last seizure, which happened six years ago in the early morning right before I was about to go on air at CBC in Fredericton. I felt off. Like a turntable with a scratch on the record. Like my mind was skipping a beat.

I woke up in the hospital with black eyes and my body swollen from falling against a desk. I felt the weight of depression. It left me as a hollowed out version of myself for months.

I was inconsolable because that hospital stay came after years of almost no seizures. It was a reminder that no matter how long I've gone without one, a breakthrough seizure is always possible.

Lokre encouraged me to incorporate my experiences into the song. She said it may not sound like a typical lullaby, but it could help me explore my journey with epilepsy and share everything I've gone through with my baby.

We kept the melody simple on the keyboard so that I could eventually play the song myself on the piano. We based the lyrics on my poetry and Lokre helped me translate those verses into a musical narrative.

Through each note and line, we wanted to send a message of love to my baby. Even though I'm not an incredible songstress, it was important I sing the song when we recorded. We called the song The Road to You.

LISTEN | Julianne Hazlewood sings the lullaby, The Road to You

White Coat Black Art3:05Julianne Hazlewood sings the lullaby she recorded for herself and her child

Julianne Hazlewoods song, The Road to You, describes her journey of living with epilepsy and her pregnancy.

Throughout my pregnancy, I've been hard on myself. I've thought, "your last seizure was years ago. Why are you so fearful of having another one? Why can't you let it go?"

But as Dr. Bui reminded me, for many women who have seizures, trust in their body feels foreign. The insight holds true among other women I had the privilege of meeting in the program. It was the first time I had spoken to other people with epilepsy about their experiences.

Dr. Bui's team at the University Health Network is beginning to measure the impact of the program. They're launching a study that will look at how the Lullaby Project affects empowerment scores, anxiety, depression and the number of seizures participants have.

I see my past seizures as leaving an emotional scar tissue of sorts. The Lullaby Project helped me wade through those layers of trauma.

After I recorded my song, my mom and I shared a cup of tea. As she felt my belly for kicks, she said, "You look so happy." I smiled. I told her I felt at peace. That the process of creating music allowed me to unravel my body of memories, of my seizures, and confront my fears. As I glanced at my growing belly, I told her "somehow I feel lighter."

Now I wait. Once my baby enters the world, I'll finally get to sing my lullaby to him. I'll share my journey, as we begin ours together.

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