AboutFace, Janeway craniofacial team help parents learn about facial birth defects
Kyle Cox may or may not grow up to be a firefighter, but at the age of four, he enjoys playing with his toy fire truck. — Photo by Gary Hebbard/The Telegram
Watching two-year-old Jackson Leonard play with his drums, Thomas the Tank Engine trains, and bright red smooching Elmo, it’s easy to forget this toddler once had a large hole in his face.
But a photo of Jackson on the living room wall shows how he looked as an infant, before surgeries to repair his cleft lip and palate.
While it’s obvious from scars around his upper lip that Jackson has had surgery, it’s his brown eyes, big smile and willingness to give a stranger a hug that leaves the biggest mark on those who meet him for the first time.
Babies with facial birth defects often have feeding issues and problems with their teeth and speech. Many children need braces and speech therapy.
Amanda Leonard said she’s learned a lot about her son’s health problems from the Janeway’s craniofacial team.
She also attends various events in this province organized by the Toronto-based organization AboutFace. The national organization supports people with facial disfigurements.
According to AboutFace statistics, 10,000 babies are born every year in Canada with facial birth defects. Cleft lip and palate is the most common condition, occurring in one out of every 600 live births.
Lisa Sooley became involved with the organization after her son Kyle (now four) was born with a cleft lip and palate.
As an AboutFace volunteer community representative, Sooley hosts parent and baby support group meetings.
With the help of the Janeway’s craniofacial team, she also organizes a yearly camp for youth and an annual picnic for children and their families. When Jackson was a baby, his mother often talked about feeding and other issues with Sooley and other parents she’s met through About Face.
Babies with a cleft lip and palate need to be fed with a special bottle, Leonard said.
The bottles cannot be sterilized by boiling them.
“Even little things like that, they are questions that you can only ask a parent who has gone through a similar situation,” she said.
Leonard and her husband Terrence Leonard also worried about taking Jackson’s bottle away earlier than most babies are weaned.
Babies need to be off the bottle before their palate is repaired.
“Just talking with other parents about what cups worked good really helped,” she said.
“I still worry to this day how he will be treated in school because kids can be very mean. … But, let’s face it, you don’t need to have a facial difference these days to be bullied.” Lisa Sooley
Like Leonard, Sooley also turned to the Janeway’s craniofacial team when Kyle was born. The professional advice she received helped her a great deal, she said.
As a mother, Sooley said, she knew she could handle whatever problems Kyle would encounter.
Initially, however, she said she was afraid to show people pictures of Kyle — afraid of their reaction.
“I was so happy with my family and friends’ reactions. They didn’t even see the cleft lip … they just seen him.”
That’s not true where strangers are concerned, she said.
Sooley said when out in public, some people approached her to say how sorry they were about Kyle’s birth defect.
She heard the expression “what a sin” a lot, she said, before Kyle had his surgeries.
“I still worry to this day how he will be treated in school because kids can be very mean. … But, let’s face it, you don’t need to have a facial difference these days to be bullied,” Sooley says.
Sooley is fundraising to provide schools in this province with an educational program offered by About Face.
Paul Stanley, of the rock band Kiss, created the program to help students change their attitudes towards people with facial differences. (Stanley was born with an ear deformity.)
Fourteen-year-old Brittany Lane of Bishop’s Falls attends Camp Trailblazers every year.
Brittany was also born with a cleft lip and palate which was repaired when she was a baby.
“I like how everyone gets a chance to show their different feelings and show how they really feel about their facial differences,” Brittany said.
Sooley is grateful to local businesses that support About Face initiatives, including North Point Sports Complex on O’Leary Avenue in St. John’s.
The organization is hosting a ball hockey tournament June 11 with proceeds going to About Face.
Cost of team registration is $100. For more information on the tournament, call Sooley at 709-745-8787 or e-mail firstname.lastname@example.org.