My Son’s Mystery Medical Condition and Our Family’s Brave New World

It’s hard enough raising a child with an alarming array of symptoms. It’s even harder when doctors can’t figure out what’s wrong.

Photos by Ally Burnett

My father-in-law, a pastor for 38 years, says the smartest words he offers his church members are often, “I don’t know.” I think of these words now as a pronouncement over my son’s life, wrapped around his tiny ankle at birth, as important as his name or medical record number: Baby Boy Harris. Five pounds, 15.5 ounces. Level of unknown: High.

My son, Tophs, now three, was 22 months old when he first turned heads – by sleeping. He’d slept later than usual one morning and hadn’t cried or called for me from his crib. His heart seemed to be pounding through his chest, and when he did wake up for a few minutes, he only drank water and refused any breakfast. When I laid him on the living room floor to change his diaper and he remained asleep, I knew it was time to call the doctor.

An hour later, a pediatrician checked his eyes and stomach, noted his increased heart rate, and asked if there was any way he might have swallowed pills or poison.