When Ella Dorsey was born, her father Paul noticed something different about the shape of her skull. Her mother Cynthia, tired after the birth, assumed Ella’s head had gotten a little misshapen going through the birth canal, not an unusual thing to happen. But just before they were discharged, Cynthia noticed that a pediatrician she hadn’t yet met was paying particular attention to Ella’s head.
“She was holding the baby, touching her head, constantly going over the baby’s skull,” she remembers. “I finally said to her, ‘Is the baby OK?’”
That’s when Cynthia first heard the term craniosynostosis. She felt the bony ridge at the top of Ella’s head where the plates of her skull had fused together too early. Normally, these plates stay open into puberty to allow the brain room to grow, but in 1 of about 2,500 babies, the plates fuse together too early.
“I’m hysterically crying, shocked, still not knowing what this condition is,” Cynthia recounts. “As a parent, I’m thinking, ‘She’s going to have issues that will last a lifetime.’ I probably cried more than I cried in my entire life.” …
Seventeen-year-old Kyle Arieta lives for football, but as his mother is quick to note, football doesn’t define him. Instead, she points to a quiet determination that he’s learned from his years on the playing field. It’s an attitude of pushing through and moving beyond that’s served him well in the game, and which drove him to get back on his feet after the brain tumor.
When the southeastern Massachusetts native went to bed one night last May, he’d been having headaches off and on for a while. They weren’t all that bad, more like a mild cold that wouldn’t go away.
That next morning, though, it was clear that the headaches had been a sign of something more. Kyle awoke in head-splitting pain—and nearly blind.
By the end of the day, he was at Boston Children’s Hospital, where neurosurgeons performed emergency surgery to remove a tumor growing in his pituitary gland—a pea-sized part of the brain that acts like a control room for the body’s hormones. …
When faced with a sick child, every parent in the world wants the same thing—the best care possible. Often, all it takes is a quick visit with the local health care provider. Occasionally, it means a trip to the local hospital or short stay at an academic medical center. In rare cases, obtaining the best care requires an extraordinary effort.
A mother finds herself researching the world’s best pediatric neurosurgeons. An uncle turns to YouTube to learn more about brain tumors. Physicians on opposite corners of the globe find ways to communicate and collaborate. And a family boards an air ambulance, embarking on a 7,000-mile journey, anticipating a marathon neurosurgery for their child and hoping for the best.
In December 2013, Mohammad and Hend Al Ansari, from Dubai, United Arab Emirates, found themselves in that rare group of parents. …
It was a few years ago, but I still remember that cold, grey February morning vividly. As I tugged on my boots and winter coat—and fought with my zipper through my thick gloves—I called out to my mother to let her know that I was heading out with friends to go sledding.
“Be careful,” she said from the other room, “I love you.”
Those were the last words my mother said to me on what would turn out to be one of the scariest days of my life.
As we pulled up to the Newton Commonwealth Golf Course and stepped outside, all we could see was our breath in the cold morning air and the glint of the sun reflecting off the icy hills sprawled in front of us. We were excited to hit the slopes, but the ground was so iced over it took us a good 15 minutes just to reach the top of the first hill. The ride down was much, much faster. …