Ben Frost and his daughter, Parker, of Delray Beach. Both were born with clefts and now try to help others. Photo provided
By Jan Engoren
Father and daughter Ben Frost and Parker Frost were both born with clefts — a defect affecting one in every 700 births, according to Smile Train, a global nonprofit that provides free cleft surgeries and care in more than 75 countries.
A cleft is an opening or split in the upper lip, the roof of the mouth (palate), or both.
While the condition can be corrected through surgery, speech therapy and other care, what defines this father and daughter wasn’t their diagnosis — it was their resilience at a young age.
“Being born with a cleft forces you to learn life lessons about the importance of feeling good about yourself,” says Ben, 51, an investment banker with Goldman Sachs who moved from New York to Delray Beach three years ago. “I’ve learned to be less concerned with how others see me.”
Born with a bilateral cleft, Ben Frost spent nearly one week each year in the hospital until age 13, undergoing surgeries to construct a hard palate, repair his lip and realign his jaw and teeth. He also attended speech therapy to relearn how to speak clearly — a process made easier by a nursery school friend who took the time to understand him.
Frost says his condition never hindered his ability to thrive: “I have a beautiful family and a wonderful job.”
His biggest concern was passing on the condition. While his older daughter, Alexa, does not have a cleft, a fetal 3-D ultrasound revealed that his second daughter, Parker, would be born with one, a unilateral cleft.
A senior at Pine Crest School in Fort Lauderdale, Parker, 17, plays golf and beach volleyball and plans to study marketing and sports management in college. She and her dad are die-hard Yankees fans, though Ben is open to rooting for his adopted home team, the Marlins.
While Ben Frost’s childhood was shaped by hospital stays and speech therapy, Parker Frost faced an additional challenge: growing up with a cleft in the age of social media.
“It was hard to look in the mirror and see that you look different from your friends,” she says. “It took a toll on my confidence.”
She endured six major and several minor surgeries — each painful, each requiring weeks of recovery.
“It was the hardest time in my life,” she says. “It takes a toll on the entire family.”
The most recent was last summer, to fix a deviated septum and help her breathe.
Now Ben Frost says he and daughter are both “totally fine,” with no serious ongoing issues.
From an early age, Parker Frost wanted to help others with the same condition. Her family became involved with Smile Train. Over the past 25 years, Smile Train has supported more than 2 million surgeries, along with speech therapy, psychological support, and orthodontics.
Last year, Parker Frost became a student ambassador and raised $1,500 by selling handmade beaded bracelets. “I wanted every bead to mean something,” she says. “Each one helped a child smile.”
Iva Ballou, 40, Smile Train’s community development manager, was born with a bilateral cleft. “I was that little girl who didn’t have a community,” she says. “And now I have one.”
Ballou says the cleft community is now speaking “loud and proud,” and she encourages others to listen. “We are funny, intelligent and resilient.”
Ben Frost, who spent most of his life not talking about his cleft, says he’s proud of his daughter for sharing her story.
“Smile Train is giving her the confidence to talk about it and connect with others,” he says. “She’s a great role model.”
He calls the surgeries life-changing. “With this surgery, every child can live a full and healthy life,” he says.
In November, the Frosts spoke at Cleft Con, an online seminar hosted by Smile Train.
“I never knew anyone else with a cleft, especially at my age,” Parker says. “Even though I learned a lot from my dad, I wanted to relate to people my age.”
She says peer support is essential. “I felt that no one understood what I was going through.”
In her role with Smile Train, Parker hopes to help others embrace their differences. “Recognize that it’s part of you,” she says. “But it doesn’t have to define you.”
And while the scar never goes away, she says, it’s her personality people remember. “Everyone has something they feel insecure about,” she says. “Learn to love that part of yourself.”
As Parker looks forward to college next fall, she carries with her the resilience she’s learned and the power to help others appreciate the beauty of imperfection.
Jan Engoren writes about health and healthy living. Send column ideas to jengoren@hotmail.com.
Smile Train
To learn more about cleft treatments and support for cleft patients, visit smiletrain.org. Or join others at the seventh annual Cleft Con, which takes place virtually in November at a date to be announced and in person July 17-19 in Phoenix.
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