How It Feels to Have a Baby With an Undiagnosed Illness
The grueling reality of waiting for the unknown.
It started out as a twitch.
A little baby leg shaking ever so slightly on the changing table. I wasn’t sure if I’d really seen it, or if like an electricity surge making the lights flicker momentarily, it was just a trick of the eyes.
Then the right leg began to shake, followed quickly by the left arm, and I was jolted into reality. My brain couldn’t quite give it a name yet, but, as his eyes fixated on the corner edge of a picture frame hung with care during my nesting phase, I took out my phone and recorded his tiny body shaking on the table. 45 eternal seconds later, he was still, the switch flipped.
I didn’t tell my husband.
I went to sleep that night replaying the episode in my head, still refusing to give it a name. I had nightmares, I woke up in a panic, I googled. I swore I’d call the doctor first thing the next morning.
It happened again before I had a chance to call. 3 more times, 3 more surges, before I got him to the doctor. I finally found the courage to croak out “They’re seizures, aren’t they?”
Then it went dark. All energy drained from my body as the doctor spoke, and the nurses scurried. They offered to call me an ambulance to take him to the pediatric emergency room an hour away. I cried, just for a second, at the thought of my two-month-old baby alone in an ambulance, and insisted on driving him myself.
The next few hours buzzed. More nurses, more seizures, more doctors, more tests, more seizures. Seven in less than twenty-four hours. All the same; one limb would start, and like a spark, his other limbs would follow, eyes fixed to one spot, my eyes fixed on him, waiting for it to end. I counted, one Mississippi, two Mississippi, knowing the longer the seizure lasted, the farther he slipped from me.
His last seizure was two and a half minutes long.
Then the brain-scrambling drug was shot down his throat and he was out, his little body finally able rest. My husband swindled his way into the COVID-wary ER, vehemently telling the nurses that I needed a sandwich (I did) and that his son needed his daddy (he did).
We carried our sweet, high-as-a-kite babe up to a hospital room the size of a closet and closed the door on our old existence. The buzz continued; neurologist, residents, no sleep, another EEG, dietician, no sleep, is his IV okay? please don’t make him go through that again, nurses, nurses, nurses, no sleep, COFFEE.
But no more seizures.
No more seizures.
“His brain looks great, structurally.”
“He has…interesting features…”
“He’s quite underweight.”
“You need to see the geneticist.”
We left two days later in a haze, now armchair experts on all the things that cause epilepsy, all the things our son might have.
And so we wait, as every twitch catches our breath, every distant stare stops us cold, every nap meticulously timed.
The wait is a scary place. It’s dark in the wait. We’re anticipating behavior changes, developmental delays, and early interventions. Desperate to do research, join support groups, do SOMETHING, anything to get out of the darkness. We’re sitting on the edge, just waiting for the lights to come back on.
