Maura Fern: A Portrait of Infant Epilepsy

Yesterday was conceivably Maura Fern's worst day since leaving Children's Hospital of Philadelphia where It wasn't uncommon for her to have upwards of seven seizures per day. Yesterday she experienced five episodes (up from the two the day before that).

It's hard to believe her first episode occurred within the first 40-hours of life, and here she is almost 4-months-old. As you can imagine, the appearance of her seizures have changed with her age.

The seizures typically begin with a piercing cry. it is unmistakable, like nothing you have ever heard (and you can hear it across the house). Right then hear back arches upward and eyes roll to the back-left. They appear keenly focused on some distant object, and will not track faces or voices.

Maura's muscle tenses. Her arms fall to the side and fists start pumping. Every last muscle in her face starts to twitch… All of which is coordinated in a rapid, pulsing rhythm of contract, release, contract, release.

Even her breathing is gripped by the seizures as her lungs struggle against shallow, rhythmic breaths. When she was much younger, she would enter a state of apnea, sometimes requiring assisted breathing from the CHOP nurses. Now, she becomes quite pale… and you wait for her to regain control.

120 seconds of pure helplessness. There is nothing we, the parents, can do outside of just hold her lovingly, call her name waiting for some response, and count every tick of that clock, and wait for the typically, two-minute episode to end.

There is no rhyme or reason to the onset, though Caroline and I have recently associated a trigger upon waking. Right now that is purely speculation, as we are grasping at straws for any real answers.

Just imagine looking at a peacefully sleeping baby, and worrying about the next time she wakes. You might have some idea… Though, to be honest we aren't fearful… just anxious knowing it can happen at any time (and very grateful when it doesn't).

We are hopeful for a reprieve from Maura's epilepsy, and can have a least another month-plus seizure free; though we are really praying she grows out of this condition.