Like many new mothers, Lyana Guzman Gutierrez was exhausted but overjoyed after giving birth to a healthy and beautiful baby boy. But within two weeks, Lyana, who lived near San Jose, Costa Rica, noticed that Marcel’s eyes and other facial features were not aligned.
Lyana’s mother urged her to bring Marcel to the pediatrician, who referred her to a local radiologist. The specialist diagnosed Marcel with craniosynostosis, a condition in which the fibrous joints or sutures between the plates of the skull fuse too early during a child’s development. This resulted in asymmetry of Marcel’s head which, if left untreated, could lead to further disfiguration, brain and skull growth issues and possible neurological complications.
Through her research, Lyana had already suspected Marcel had craniosynostosis and started exploring her options. Though the neurosurgeon in Costa Rica was willing to treat Marcel, Lyana explains, “My husband and I were looking for the best doctors and the best place in the world to treat Marcel, and we were going to do whatever it took.”
Lyana’s research led her to Boston Children’s Hospital’s website and a video of Mark Proctor, MD, vice chair of neurosurgery. “Something was telling me, you can trust this guy. He’s the one. It was a mother’s instinct.”
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.)