When the pediatrician said my 8-year-old son's nearly constant eye-rolling was a tic he'd outgrow, I believed her. After all, she'd been a mother and doctor much longer than I'd been a mom. For the next couple of years, Matthew's tics increased, his grades sank, his coordination worsened, and I tried to believe the pediatrician's repeated reassurances that there was nothing to worry about. My husband agreed with her, so I convinced myself I was overreacting.
Yet deep in my heart, I knew something was wrong. Afraid of conflict, I timidly spoke to the doctor and mentioned to my husband Matthew's increasing forgetfulness and immature behavior. But when they pushed back, I backed down.
After three years, I finally got a doctor to order an MRI. On a chilly Saturday morning, I stood in a cramped radiology lab next to my husband, looking at a hazy image on the computer screen. The cross-section of Matthew's brain looked nothing like the pictures in my old anatomy and physiology textbooks. There was an abyss of black in the brain as if the middle had been sucked out.
The radiologist pointed to a ghostly white blob at the edge of the void: a brain tumor, inoperable but benign. It had caused severe hydrocephalus that squished Matthew's brain into a sliver against his skull. I felt both vindicated and ashamed. Yes, Matthew's medical mystery had finally been solved, but why hadn't I spoken up sooner and louder?
I shudder to think what might have happened had Matthew's hydrocephalus gone untreated much longer. Massive headaches? A seizure? The absence of these common brain tumor symptoms contributed to the three-year delay in getting him accurately diagnosed. While I am not to blame for Matthew's tumor or his delayed diagnosis, I played a role in how his story unfolded. His pediatrician and my husband did as well; we share accountability. I don't tell my story to shame anyone, including myself. I tell it so others will learn from my experience.
A simple but delicate surgery—an endoscopic third ventriculostomy—treated Matthew's hydrocephalus, and although he didn't “bounce back” as predicted, his slow recovery brought him more success than I could have imagined. Today, at 36, he is fully self-sufficient, owns a home, and has accommodated his minor cognitive impairments so well that even his friends don't know his medical history. As one of the lucky mothers, I am grateful every day.
Why it took me so long to speak up is complicated, but the lesson I learned is simple and one I want to share: You are your child's best advocate. If a doctor dismisses your concerns, find another doctor. If that provider sends you home with unsatisfactory answers, go back again and again until you're satisfied. Be a gnat in the ear of your child's medical team and don't let them swat you away.
If you suspect your child's health is at risk, listen to your heart, follow your instincts, use your brain, and channel your voice. One day your child may thank you.
Karen DeBonis lives in Troy, NY, with her husband of 40 years. Her memoir, Growth: A Mother, Her Son, and the Brain Tumor They Survived, will be released in May.
