Newark man born with cleft palate aims to use his story to inspire others

Born with a cleft lip and cleft palate, Sam Rosen was often bullied and stigmatized growing up.

“Every single person I met growing up, I had to explain my face,” Rosen said. “It was never just like, 'How you are? What's your name? Where are you from?' Most of the time it was like, 'What's on your lip? What happened to you? Was it an accident?'”

This weekend, the 30-year-old Newarker will share his story as a featured speaker at Cleft Con in Houston. The conference will bring together cleft patients, family members and medical professionals. It is organized by Smile Train, a nonprofit that helps train doctors and provides cleft surgeries worldwide.

Rosen hopes to inspire other people affected by clefts and help them build their sense of confidence and resilience.

“I think one of the biggest challenges is finding comfort in yourself, because you're already going through a lot of medical challenges as well as the normal social challenges any non-cleft goes through,” he said.

A cleft occurs when certain body parts and structures do not fuse together during fetal development. Clefts can involve the lip and/or the roof of the mouth, which is made up of both hard and soft palate. Clefts are easily repairable, but worldwide, many children with clefts never receive the reconstructive surgery they need.

Rosen was born in Bulgaria and was adopted by a family in the United States in 1996 at the age of 3. His cleft lip was repaired in Bulgaria, but he didn't get surgery on his cleft palate until he arrived in the U.S.

“You need your soft palate to speak.” his father, Max, said. “Forget about learning Bulgarian or English. He couldn't speak at all.”

It took years of speech therapy and a second surgery for him to catch up to his peers.

Still, the combined stigmas of being adopted, having a speech impediment and having facial differences was rough on a child. Rosen was shy in school and had trouble fitting in.

He calls it “the barrier of first impressions,” knowing that every new person he meets will zero in on his face and inevitably have questions about it.

“The first thing you see is someone's face, so it's such a challenge,” he said. “Because of all the unwanted negative attention, I kept to myself a lot.”

Rosen first discovered Smile Train while he was in high school and he hosted a fundraiser for the organization, selling bracelets and cookies to help other kids with clefts.

Attending his first Cleft Con was a life-changing experience because, for the first time, he was in a room full of people who understood exactly what he has been through and weren't judging the way he looks.

“It's a really rare opportunity to be in a full room where you go, 'this is how everyone else feels throughout their whole lifetime, not having a difference,'” he said.

He plans to advise others to use sports, movies, music or other activities to find common interests and break down barriers.

“Finding things you enjoy and love, you can find your community,” he said.

Community is exactly what Rosen found through his involvement with Smile Train, his father said.

“Sam found a family there,” said Max Rosen, who will also speak at Cleft Con this year. “He found people like himself there and he made friends that are his friends forever. As a parent, that's pretty special to me to have him find a family.”

Thinking back to memories of Sam as a 3-year-old boy not able to speak, he can't wait to hear his son address the conference as a guest speaker.

“He's overcome every challenge that ever has been thrown in front of him,” he said. “Being able to be a public speaker is just another one of those challenges he has overcome in his life.”