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Nine-year-old David darts from the dining room table where his mom and dad, Tina and Franco, and his sisters, 15-year-old Elisa and 17-year-old Julia had gathered. The boy speeds back moments later with a laptop. David, his smiling face flush with excitement, is anxious to show pictures on the laptop that tell his story – pictures of him in hospital last year following craniofacial surgery.
David has Crouzon Syndrome, a genetic disorder that causes an infant’s skull and facial bones to fuse early, impeding normal bone growth and posing a severe threat to the brain. Typical signs of the disorder may include facial distortion. David’s mom Tina remembers the moment like it was yesterday when the family learned that David, at just ten days old, had been diagnosed by doctors at the Montreal Children’s Hospital. “We were devastated, heartbroken,” Tina recounts.
A first operation when David was a month-and-a-half old had surgeons at the MCH separating his cranial bones to give David’s brain room to develop. There was a second operation when David was eight months old. Then, just last winter, a third operation.
During his last surgery, David spent eight hours in the operating room while doctors, led by craniofacial surgeon Dr. Mirko Gilardino, attached a brace, or “halo”, around their young patient’s head. The halo features rods that were adjusted over many weeks to slowly force David’s skull and facial bones into positions that would allow his brain to grow and his face to develop normally. The boy wore the device night and day for close to three months.
David says the brace hurt. “I hated it,” he remembers. Still, he recognized the blessing it brought. David’s dad Franco says his son dubbed the device “the Transformer.” Indeed, it helped “transform” David’s skull and face which are now developing more naturally. He is growing fast, strong and, as his eldest sister Julia insisted we point out, “he’s very happy.”
David’s mom says that her son is “well-known and loved by everyone at the hospital.” David is seen by specialists all across the MCH, making him an outstanding example of the multidisciplinary care that is a hallmark of The Children’s. David’s parents are quick to share their admiration of the team of physicians and nurses who, led by “Doctor G” (Mirko Gilardino), meet regularly to discuss David’s case.