"We went to the ER, and much to our surprise, the twitch was quickly identified as a seizure. Back then, Brian and I thought seizures looked like they did on TV: a big, dramatic drop to the ground, full-body convulsions, maybe even foaming at the mouth. We never thought it could be a small, albeit rhythmic, movement of the hand. At the beginning of that awful night, and even when we were in the emergency room, Jake was completely himself."
A parent whose son died at age four struggles fifteen years later with the question “What happened?” The parent does not know why the child became sick, why recovery did not occur, or why death happened. The child was healthy and thriving for the first eight months, meeting milestones early and showing strong early health indicators. Even doctors could not explain what occurred. The parent feels the question leads conversations into painful territory and worries about how much detail to share. The parent recalls a night when a small rhythmic hand twitch was identified as a seizure, despite expectations of dramatic convulsions, while the child initially remained himself and engaged with nurses.
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