New York photo exhibition raises cleft palate repair awareness

Gazing into the camera, hazel-eyed Ethan Bell looks as poised as any of the A-list stars who model for leading photographer Peter Lindbergh.

So it’s hard to believe this adorable preschooler, so happy in his own skin, was born with a severe facial disfigurement.

A few decades ago, the condition might have blighted his life. In 2010, however, thanks to revolutionary dental, medical and surgical techniques, there is no trace of the problem.

These advances, pioneered by a Manhattan-based team of reconstructive surgeons at NYU Langone Medical Center, are now being celebrated — along with the extraordinary courage of children like Ethan — in a unique exhibition.

Opening tonight, it features portraits of young kids, mostly New Yorkers, who have had cleft lip and palate repair. The pictures were taken by Lindbergh and other well-known professionals, such as “America’s Next Top Model‘s” Nigel Barker and Bravo’s Markus Klinko and Indrani.

“We want to show hope for parents whose baby is born with a cleft lip and palate,” says Ethan’s dad, Adam Bell, founder of the Smiley Faces Foundation, which organized the project. “At first, the situation might seem hopeless. But it’s not.

“This is our way of saying to them: ‘It’s going to be fine. Honestly. Look at these pictures! Here’s all the proof you need.’?”

When Ethan was born, Bell and his wife, Donna, surely would have welcomed the reassurance they are now giving others.

Routine scans hadn’t picked up the disability and they went into shock after their otherwise healthy boy was delivered.

“It was a C-section and the doctor was giving a commentary, saying: ‘Here we go, here’s a leg, here’s an arm, it’s a beautiful boy,’?” recalls Bell, of Westchester. “Then there was a silence and an ‘Oh!’ It looked as if our son had a gaping hole in his face — and our whole world collapsed.”

Thankfully, after the immediate devastation, the Bells were swiftly referred to the experts at NYU, who recommended a series of state-of-the-art procedures.

Ethan was first fitted with a so-called NUM, or nasoalveolar molding, an ingenious device similar to a retainer that reshapes the lips, gums and nostrils, which were developing the wrong way.

Next, he had two operations. The first, at 6 months, closed the cleft in his lip. Another, soon after his first birthday, concentrated on the roof of his mouth. He will require tooth implants, but after that won’t need further surgery before a relatively routine procedure on his nose when he is 16.

Ethan’s surgeon, Dr. Court Cutting, a leader in the field of reconstructive plastic surgery, is routinely stunned by the spectacular results of his team

“We can hardly wait to see the kids after their surgery,” he says. “We have the best job because it is so incredibly rewarding.”

Meanwhile, Ethan has no recollection of his hospital visits.

“He is just an incredibly outgoing, awesome little boy,” concludes Bell. “We were recently looking at a video of him as a baby and I pointed to his mouth and said, ‘That was your boo-boo.’ He just shrugged and went, ‘Okay, cool.’

“We definitely have a happy ending.”

Similarly, nobody would know that 17-month-old Finn McManus of New Canaan, Conn., was born with the same deformity.

His picture, by Gabrielle Revere, in which he shows off impromptu yoga moves, is also part of the exhibition.

Unlike Ethan’s case, Finn’s bilateral cleft lip and palate were detected during an ultrasound scan when his mom, Dawn, 39, was 21 weeks pregnant.

“I started crying hysterically,” she says. “We were so scared. The condition is not genetic and strikes randomly, and we were totally unprepared.”

However, after their initial despair, the couple spent the rest of the pregnancy consulting with doctors at NYU, readying themselves for the procedures and surgeries facing their son.

“I fell in love with Finn the moment I caught sight of him,” says McManus. “He has taken all the treatments in his stride. He looks wonderful — a chunky, happy baby who is a delight to be around.

“Just take a look at his portrait. We hope he inspires other parents in this same horrible situation. There is so much hope. So much joy ahead.”

The Smiley Faces Foundation photo exhibition of photographs is at Red Bull Space, 40 Thompson St. in SoHo, until Saturday. It is open to the public tomorrow, Thursday and Friday. The Smiley Faces program raises money and awareness for the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center. For more information, visit www.smileyfacesny.com

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