‘How it gets easier’: Cleft camp lets young patients socialize, share

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AURORA | It didn’t take long for 10-year-old Ava Blakely to realize that she was going to be returning to the Breckenridge Outdoor Education Center after she visited for the first time last winter.

“After the winter camp last year I just came home and I was like, ‘Mom, sign me up for summer camp right now,’” said Blakely, a soon-to-be fifth-grader at Coyote Ridge Elementary School in Broomfield. “It’s, like, fun, but it’s not like school — it’s way better.”

Sporting “mean green” braces and a multi-colored hat that she designed herself, Blakely was one of nearly 20 young adults who recently attended Cleft Camp, a biannual weekend retreat for children born with cleft lip and cleft palate. The camp is largely organized and primarily funded by Children’s Hospital Colorado in Aurora, which is where all of the campers have received treatment and undergone numerous surgeries.

The camp was formed 17 years ago at the hands of Jamie Idelberg, outreach coordinator at the cleft lip and palate clinic within Children’s, after the former dental hygienist was asked to take over the clinic’s programming duties.

“We take really good care of them all the way through (treatment), but once they hit school age, (cleft) is kind of not the focal point of their life, but it’s ever-present,” Idelberg said. “And a lot of kids would come to clinic and say, ‘I’ve never met any other kids with a cleft.’ It helps make the world a little bit smaller for them.”

During the camp, which runs for about four days at the Breckenridge Outdoor Education Center,  campers partake in typical summer camp activities like ropes courses, hiking and swimming — in frigid snowmelt. A recent visit to the camp showcased several sing-alongs to many songs floating around the Billboard Hot 100, including “Uptown Funk” by Mark Ronson.

But there’s far more to the camp than just sugary pop songs and silliness. On the second night of camp for the past 15 years, attendees have participated in a sharing circle where they talk about some of the difficulties and struggles incurred by having a cleft. Led by Zeb Carabello, a journalism and English teacher at Rangeview High School in Aurora, the ritual has become a sacred exercise for both the campers and staff.

“When I first got up there, I was just amazed at what a cool thing it was,” Carabello said. “I just kind of talk to (the campers) about my experience now that I’m an adult, what to expect and how it gets easier.”

Camper Ayden Coles, a soon-to-be eighth-grader at Aurora Frontier P-8 who has attended Cleft Camp for five consecutive years, said that the sharing circle is one of the camp’s most-important exercises.

“Having us all get together is one of the most-important things of this camp,” said Coles, who has undergone more than a dozen surgeries to repair a combined cleft lip and palate. “It’s a great idea; just to have people to talk about their experiences, their emotional expressions after hearing that (they) had to go through certain surgeries. We just share our feelings and, like, how we’ve been treated by other kids and how we’ve been taking care of those problems.”

Carabello, who was born with cleft lip and palate himself, said that the social aspect of having a cleft lip and/or palate often goes overlooked.

“In hindsight, the one part of care that was kind of neglected was the social part,” he said. “And that’s why this camp is so amazing.”

Carabello’s ties to the camp have taken on additional meaning in recent years, after his son, Luca, was born with a rare bilateral cleft lip and palate about four years ago. The Rangeview teacher has helped raise about $125,000 for Cleft Camp and other cleft lip and palate initiatives through an annual bocce ball tournament he has organized for the past 10 years.

In the United States, some sort of cleft occurs in about one in every 700 births, according to Children’s Hospital. That equates to about 2,650 babies who are born with a cleft palate and 4,440 babies who are born with a cleft lip with or without a cleft palate in the United States each year, according to the Centers for Disease Control and Prevention.

And while stigmas related to clefts are still prevalent, Idelberg said that the proliferation of social media has helped to demystify many of the lingering misunderstandings surrounding the birth defect.

“With social media, people are posting adorable pictures of babies with unrepaired (sic) clefts with huge smiles, so it’s not so scary and it’s not the picture of the child in a third-world country that’s needing surgery — and those kids definitely need surgery — but these kids can go on to lead a totally normal life,” she said. “We need to impart that knowledge to families and parents of newborns and get it out in the community, so when you see a child with a cleft it’s not ‘woe is them.’”

For campers like Blakely, who has both cleft lip and palate, the solidarity created at camp is profound.

“I think it’s cool,” she said. “Because, like, instead of people asking why you look like that, it’s just like, it’s like we’re normal people — not cleft.”