“Your baby has had a stroke.”
The world-famous pediatric neurologist sat in a hospital conference room with me and my husband. It had been four days since our first child was born. Max started having seizures on his second day of life. He’d had an MRI. And now, the results that would forever change all of our lives.
“Babies can have strokes?” I asked, shocked. My husband put his head and arms down on the table and cried.
The neurologist drew a diagram of the brain and explained its various parts. Max’s stroke was large. As a result, the doctor said somberly, he might never walk or talk. He could have hearing and vision problems. He could be cognitively impaired.
I felt numb. Soon enough, though, the grief set in. Over the next two days, I spent hours gazing sadly at Max, so pink and plump, yet unconscious and hooked up to countless wires. I kissed the top of the incubator where he lay. I sat in the rocking chair in the nursing room, pumped milk to save, and heaved sobs.
I’d always been a person who considered anything achievable, if I worked hard. I’d risen through the ranks of magazine publishing to become deputy editor of Glamour. Now parenthood had spun out of control, careening into tragedy. My baby had extensive brain damage. What could I do?
We finally drove home to pick up fresh clothes. I peeked into Max’s room, got choked up, and closed the door. I sat down at my desk. And as soon as I leaned in to the computer screen, “me” flashed on. Yes, I had the power to help Max.
I searched for information about infant stroke, which I discovered occurs in one of every 2800 births. I joined an e-loop for parents of children who’d suffered strokes and asked what was helping their kids. I contacted a friend whose husband was a pediatrician for insights. I found out about an experimental stem cell treatment and emailed the doctor. As I typed, my despair morphed into determination.
“You’re going to be a great champion for your son,” the NICU social worker said on the day we took Max home, two weeks after he was born.
I have never stopped. Max was diagnosed with cerebral palsy at two, and I’ve found top-notch doctors and therapists, done battle with insurance companies to pay for them, and switched schools to a more progressive one. When I found out that Duke University was doing a study on stem cell infusions and kids with CP, I talked my way into it.
And Max? He commando-crawled at 18 months, like an army soldier in training; walked at three; and said words at five. At 10, he has his challenges, but in many ways is like any other kid: he loves mac ‘n cheese, watching YouTube videos, and tormenting his little sister. He’s bright. He’s funny. He’s full of determination. And I know exactly where he gets it from.