When Dominic Gundrum first came to Boston Children’s Hospital late in 2012, his future was very much unknown.
He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead, known to the medical community as a Tessier midline facial cleft. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead. It’s a condition called an encephalocele, and Dominic’s was so severe doctors weren’t sure how much they would be able to help him.
When Luke and Emily Hawkins first learned that their daughter Norah may have been born with a birth defect called craniosynostosis—meaning the sutures of her skull may have fused too early—they were understandably worried. A child’s skull typically takes years to fully fuse, allowing the brain room to grow and develop during her formative years. But if the skull fuses too soon, as Norah’s doctor suspected might have been the case with her, it can create excess pressure on the brain that can lead to developmental delays, learning disabilities and possible cosmetic issues.
It was a lot for the first-time parents to process, especially since Norah showed so few signs of trouble. “At two months old, she was hitting all the typical milestones, but there were a few aspects of her head growth that were concerning to her doctor,” Emily remembers. “We had x-rays taken, but unfortunately, those were unable to clearly show whether or not she had the condition. It was a very uncertain and frightening time.”
Dominic Gundrum’s smile is truly special. Or, more accurately, there’s something really special about his smiles. They light up a room, even though they’re the result of a rare and extremely difficult to correct birth defect. Still, despite how atypical they seem at first, Dominic’s giggling smiles are surprisingly disarming.
To have something look so different—but still spread such joy—is truly unique. And, in a way, that uniqueness defines Dominic perfectly.
An uncertain beginning
During a routine 20-week ultrasound in their home state of Wisconsin, Dominic’s parents, Mark and Mary, were excited to find out if they were having a boy or girl. But when doctors looked at Mary’s grainy ultrasound they discovered more than Dominic’s sex. Though it was hard to tell for sure, the ultrasound image showed that Dominic’s skull hadn’t fused together properly early in the pregnancy, leaving a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead—a condition known in the medical world as a Tessier midline facial cleft.
But the cleft wasn’t the only issue Dominic was facing: some fluid and tissue from his brain, normally encased in the skull, had seeped outwards through the cleft, forming a golf ball-sized bubble underneath the skin of his forehead. (A condition called an encephalocele.)
Our daughter Casey was born on August 13, 1996, weighing 8 pounds and 13 .5 ounces and measuring 22 inches long. It was a smooth delivery, but soon after birth the doctors noticed “something different” about her. In an instant, what was supposed to be a joyous occasion turned into a dark, scary moment.
It was soon discovered that Casey had unilateral craniosynostosis, a condition in which the fibrous joints between the plates of the skull fuse too early during a development. From that day forward I was told I would need to get used to having a daughter with disabilities and limitations. People said I should prepare myself for disappointment and that mothering a “different” child was no walk in the park. I was shocked, confused and scared. My baby had a birth defect that I had never heard of. I spent many nights wondering why this happened and what was I supposed to do?
It’s been hard, but we haven’t had to do it alone. Since she was born Casey has had many doctors, but her two favorites are the one’s at Children’s Hospital Boston. Over the years Dr. Mulliken, co-director of Children’s Vascular Anomalies Center and Dr. Mark Proctor, her neurosurgeon, have been great sources of support for our family. Without their help I can’t imagine where Casey would be today.