Living With The Fear of SUDEP

SUDEP (sudden unexpected death in epilepsy)

When a child in our community dies suddenly, the world closes in around us. Having to explain to our daughter that her ten-year-old friend died unexpectedly was hard. It’s tough enough to make sense of it as an adult. For a child, it’s incomprehensible.

The sorrow we feel for this beautiful family goes beyond sympathy. We feel a level of empathy that only other epilepsy parents would know. When a child is lost to SUDEP all parents of children with epilepsy receive a jarring reminder that this can happen. No child is exempt. 

We are devastated for the family. It hits close to home as we direct some of the shock inward by recalling our own children’s worst seizures. We relive the panic. We hear the ambulance sirens and repeat the silent prayers and promises to the almighty or whomever is listening to “Just please, please let her be okay.”

When an otherwise healthy child dies without warning or explanation, it shakes us to the core. For me, post traumatic stress has brought up memories from our daughter’s first violent seizures at the age of three when we came very close to losing her.

SUDEP—(sudden unexpected death in epilepsy) is a fatal complication of epilepsy. It refers to the sudden death of a person with epilepsy, without warning, and where no toxicological or anatomical cause of death could be found. Like SIDs in infancy, it’s a menacing mystery. 

My friend and fellow epilepsy mom calls SUDEP the “ugly little secret of epilepsy.” We’re aware of it, but we just don’t talk about it. It’s just too frightening.

Along with great sadness and disbelief, many of the parents in my circle of epilepsy families have reacted to this tragic loss with sadness but also fear. Some of us are even sleeping with our kids who have seizures, watching over them just like we did when they were little. 

Someone in my life suggested I might be over-reacting. “You know SUDEP is rare,” they told me, trying to alleviate my concern.

Rare, I know. But I also know the terror of holding a limp child, blue lipped and unresponsive while waiting for an ambulance. It’s an image that is proving impossible to ever shake.

They also said I might be making this tragic loss too much about me. I’m not exactly sure what they meant but that, but I’ve decided that unless you’ve lived it, you can’t possibly know what this feels like.

They weren’t there to see my daughter resuscitated by paramedics. They don’t know that if I hadn’t randomly gone into her room after that major status epilepticus seizure when I did, things might have ended in tragedy. They also don’t know that without the newly acquired video monitor we had just set up in her room, I wouldn’t have seen her seizing and choking during a nap. It was the only reason I was able to get to her in time.

We were lucky these episodes, though during sleep, were when my daughter was sleeping, but I was awake.

They don’t think about any of that. We, as the parents of a child with epilepsy, think about it all the time. 

They also don’t understand that what happened to Avery’s sweet friend was tragic, but also personal, because it could easily have been any one of us.

I can’t continue to sleep with my twelve-year old. It’s not a long-term solution. But for now, it’s what I’m doing. At least until I can find a way to set the fear aside.

One of my daughter’s friends commented on a post I shared on Instagram about SUDEP. She said, “It’s scary but we can’t let it stop us from living. Life is too short for that.” Such wise words from a beautifully brave young woman living with epilepsy. 

The fear will calm. It has before. It just takes time.

We’ll continue to spread awareness about SUDEP. We’ll read more about devices that can help keep kids safer while they sleep—safe pillows and heart rate monitors, for example. (Post about that coming soon.)

We’ll keep supporting our daughter through her grief and confusion. 

And most importantly, we’ll remember Grace and keep her family in our thoughts. ?

I was asked to speak at a fundraiser for Epilepsy South Central Ontario. I talked about our family’s experience with epilepsy and how grateful we are for “epilepsy safe” summer camps like Sunny Days Camp. The speech is here: 

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