Facing Crouzon syndrome with confidence and courage
by MARY FRANCES HILL
When Colton Francis fixes his camera lens on the natural world near his Duncan home, he’s likely to capture the sun’s ever-changing grace. His images on social media – of sunbeams streaming through tree branches, or warming the surfaces of shallow rivers – reveal a perspective beyond his 13 years.
His unique perceptions may have kept him strong over the last three years, during a health-care odyssey that included two complex craniofacial (skull and face) surgeries to deal with the complications of Crouzon syndrome, a disorder that makes an infant’s skull unable to expand, inhibiting bone and brain growth. Though Colton’s case is mild, he endured harsh peer judgment – teased, bullied and subject to stares.
“Kids are cruel and they don’t know that what they say is going to affect the person possibly for their entire life,” says his mother, Sabrina.
Sabrina and Rob Francis grew concerned when Colton was a mere month old, and didn’t respond to the sounds of squeaking toys. His eyes were set wide apart, and he looked much different than other babies. Sabrina’s fears were initially dismissed as typical new-mom anxieties. Eventually, the family was referred to specialists at BC Children’s Hospital’s Division of Plastic Surgery, who identified Colton’s blocked ear canal as one symptom of Crouzon syndrome.
Children with the disorder show low-set ears, ear canal malformations, a wide distance between the eyes, insufficient growth of the mid-face, and a chin that appears to protrude. Patients endure blocked ear canals, sleep apnea, headaches and facial pain.
Sabrina says it was unbearable to watch her child suffer from intense headaches and pain of facial pressure growing in frequency and severity. “It was really hard. You don’t want a child constantly taking Advil, but you have to give him something because he was in such excruciating pain.”
Colton went through two major surgeries that ultimately led to recovery from pain — and a new
perspective on life.
In 2013 Colton underwent his first procedure, a bilateral frontal craniotomy, with Dr. Douglas Courtemanche, a plastic surgeon specializing in craniofacial reconstruction and Dr. Douglas Cochrane, a neurosurgeon at BC Children’s Hospital. The procedure required an incision over the head, from one ear to the other, to advance Colton’s brow.
Two years later, on January 30, 2015, Dr. Courtemanche performed a LeFort III procedure, a 12-hour mid-face advancement operation. “It’s one of the most complicated operations that we do [in the Plastic Surgery department],” he says. It involved cutting bone to advance the mid-face and ultimately gives the face a sense of proportion. Moving the face and upper jaw forward helps open up the airway to help breathing and ease sleep apnea; bringing teeth forward corrects the bite.
With plastic surgery, life resumes as normal for most Crouzon patients. For Colton, “normal” means a bucolic life in Duncan, surrounded by dogs at the family’s canine training centre, and resuming the photography that so impresses his social media followers.
But it’s the new burst of confidence that has amazed Colton’s parents over the past year. Before the second surgery Colton had grown his hair to cover his forehead and he hid any sign of what he’d been through.
Today, he’s eager to show off his scar with short haircuts, and the lock of blue hair on his forehead shows the emergence of a Colton who’s more robust and prouder than ever.
“Now he knows to go at the world with confidence,” says Sabrina. “It’s wonderful.”
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