SANDY — For a long time, Isabelle Scriver thought she was the only kid with a different-looking face.
She was born with a cleft lip and cleft palate, and minor facial deformities were visible from day one.
"I don't even worry about it anymore," Isabelle, 9, said Thursday.
She has bright eyes, a beautiful smile and enough energy to power a locomotive — all of which her mother believes has gotten her through some difficult years.
"She was my last kid but it felt like having a first kid all over again," said Shelley Scriver, of West Valley City. "I didn't know how to care for her."
Isabelle required a special kind of bottle and didn't gain much weight in the beginning. She needed speech training and a lot of one-on-one attention to learn how to eat and speak, among other issues that accompany the fairly common condition.
With its consistently high birth rate, Utah also has the country's highest rate of babies born with cleft lip, according to Dr. Rodney Schmelzer, a craniofacial plastic surgeon and director of the Craniofacial Foundation of Utah. He said the resulting syndromes can cause developmental challenges involving the ears and hearing, the eyes and sight, the nose and breathing, and the lips and eating, and some of them can be life-threatening.
A team of doctors is often needed to correct proper form and function for these kids, and also help them have a good quality of life.
MountainStar Healthcare's Lone Peak and Timpanogos Regional hospitals have recently expanded pediatric specialty care to provide more options for children with craniofacial conditions, and, in some cases, closer to home.
"Now local families no longer have to travel long distances to get the care their child needs," Timpanogos Hospital CEO Kimball Anderson said. He said a wide range of pediatric services, including intricate craniofacial surgeries, are now available.
On average, children with facial differences require at least six to 10 surgeries. Major changes often aren't done until the teenage years, allowing time for growth.
"We want them to feel like they can reach their potential," Schmelzer said, adding that children shouldn't be held back by anything, including craniofacial conditions they had no control over before they were born.
"There's most often a normal intellect inside of a face or body that appears different on the outside," he said. "Inside, they're just like you and I."
The foundation, along with MountainStar, hosted kids with facial differences and their families to a sneak preview of the movie "Wonder" in hopes they'll remember that "it's what's inside that counts," Schmelzer said.
The movie, inspired by real events, profiles August Pullman, a child with facial differences who is attending a mainstream elementary school for the first time. It highlights the emotional struggles that accompany the physical challenges for not only Auggie, but each member of his family as well.
"I think it will provide an understanding to be more kind," said Emily Shumway, who traveled from Preston, Idaho, with her 6-year-old daughter, Tenna, a patient of Schmelzer's, to see the movie ahead of its nationwide release on Friday. "When people are kind of mean, I think it is because they don't understand."
Shumway has many times cried her way through reading the book and has always hoped people would be kind to Tenna, which, for the most part, they have.
"Kids are curious," she said. "She notices that they notice her."
Tenna just tells them, "I was born with a hole in my lip."
Honesty and transparency, her mom believes, is the best way to foster greater understanding of the condition.
Tenna has had nine surgeries and will have more, including a major bone graft next year. And while it is hard to see her endure them, Shumway said recovery is really where the rubber meets the road.
"Kids are resilient, but it is interesting to see how long it takes them to eat again and to do other things they could do before," she said, adding that every surgery changes things enough to make it difficult. "It's hard to watch them struggle and hurt."
But there's visible progression with every procedure, Shumway said.
That's the beauty of it for Schmelzer and his team. That's the reason he does what he does and excels at it.Comment on this story
"Most of these kids get better," he said. "They flourish and they grow and they learn and thrive in life. That's what makes being a craniofacial surgeon worth it."
Schmelzer wanted kids with facial differences to see each other at Thursday's event and know they're not all that different.
"I don't want them stigmatized," he said. Schmelzer also hopes the movie makes a difference to the public.
"In this age of people bullying and demeaning others every way that they do, it's going to be good for kids," he said.