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When You Face the Possibility of Losing Your Child Because of SUDEP

The mother of a child with Dravet syndrome, who is at heightened risk of sudden unexpected death in epilepsy (SUDEP), shares the difficulties they’ve experienced with sleeping, and the worries they have with possibly losing their child at night.


When You Face the Possibility of Losing Your Child Every Night Because of SUDEP

When I adjusted to becoming a new mom to my son, the hardest thing was the lack of sleep.

At exactly 7 months old, everything changed when he had his first seizure.

Three days later he had another one, and we knew our journey was just beginning.

At 8 months old he was diagnosed with epilepsy.

We learned about something called sudden unexpected death in epilepsy (SUDEP).

The doctors had not warned us about this, and we quickly learned our son was at an increased risk.

This knowledge triggered a new kind of sleep deprivation — one in which we could hardly rest because we were so worried our boy was going to be taken from us during the night.

A year later we received the results of his genetic testing.

He had Dravet syndrome — a lifelong disorder for which there is no cure.

Individuals with Dravet struggle with debilitating seizures that are extremely difficult to control.

They are at an increased risk of SUDEP, and there is a one in five chance they will not make it to adulthood.

Now we were unable to sleep because we felt as if our son had just been given a potential death sentence.

Every night we are jolted awake to the sound of him seizing several times.

I’ve had to jump out of bed to administer oxygen and rescue medication.

I’ve awoken suddenly for no particular reason, only to roll over to check him and find him non-responsive.

In those moments his entire life flashes before my eyes, and I fear this is the moment we have been dreading for so long.

By some miracle, he has always come back to us.

When I look at the woman I am now, after years of facing my worst fears on a nightly basis, I wish I could turn back the clock.

I wish I could tell that young mom to enjoy those quiet moments in the middle of the night with her newborn baby.

I wish I could let her know that while sleep would still be hard to come by, the laughter and joy and love would be overflowing.

I wish I could tell her his quality of life would become her driving passion and that she would push herself to find joy every day.

Being the resilient creatures we are, especially as the parents of a medically fragile and complex child, we have learned to adapt.

We look at the perseverance he has, despite his many challenges, and that is where we draw our strength from.

Our hope and drive to provide him the best life possible is what pushes us through.

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