Patient Stories

Shawna was born with orofacial clefts. Lip repair is one of the early steps in the reconstruction.

Joshua's forehead shape and eye position were dramatically improved by the repositioning of his forehead and orbital bones. Joshua's defect is called craniosynostosis.

Large scale midfacial advancement by distraction osteogeneses leads to improved facial appearance and eye relationships for Jatoya.

Facing Challenges

Ask 7-year-old Ben Sherman what he likes to do, and get ready for a long list. "I play basketball and soccer and flag football and tackle football and lacrosse..."

This is not a boy who slows down for anything - not even the multiple surgeries he's had to repair his cleft lip and palate.

Cleft lip and palate occur when the structures of the lip and the roof of the mouth don't completely close before a child is born. It is the most common craniofacial anomaly and often requires several surgeries during childhood to make a complete repair.

"For many babies, early intervention is vital for developmental reasons. They have trouble with the most basic life functions such as feeding and breathing," said Dr. Michael Sadove, head of plastic surgery and the craniofacial anomalies program at Riley Hospital for Children and IU School of Medicine. "We strive to individualize the care plan for each child's unique situation."

For Ben, that meant surgery at 3 months to close his upper lip, another at 6 months to build an upper gumline and yet another at 16 months to close the roof of his mouth. After a fourth surgery at age 5, he now wears a device called a palatal expander that's helping make space for braces on his teeth.

"Ben is totally oblivious to the fact that he's different. He doesn't perceive himself as different, and that's our desired goal," said Dr. Sadove.

"I can't be with him all the time, day and night. He'll be teased; all kids are. But he's learned how to deal with it. He's tough as nails," said Ben's mom, Leslie Sherman.

Leslie is a nurse and her husband, Stuart, is a doctor. She said from day one, they've felt confident about the care Ben receives at Riley Hospital.

"The level of knowledge is exceptional," Sherman said. "For us, knowledge was power. We wanted to make the most informed decisions we could. We've had a great experience at Riley," said Sherman.

"The value of a team approach can't be overstated," said Dr. Sadove. "All of us seek to do the best we can, and you can't deny that experience is important. The sheer number of patients we deal with adds to that expertise every day. We have numerous specialists in cleft care on staff, so someone is always available to answer questions, make evaluations and perform procedures when necessary."

That comprehensive team approach to treatment is a core value of the American Cleft Palate Association's standards of care. Riley makes available under one roof all of the pediatric specialists a child with a cleft palate or other craniofacial anomaly may need, from pediatric plastic surgeons and anesthesiologists, to pediatric speech therapists, audiologists, dentists, nurses, otologists and developmental pediatricians. The team also includes care coordinators, child psychologists and social workers specially trained to help families deal with the emotional and self-esteem issues that can affect the quality of life for a child with facial differences.

"As a parent, you have hopes, dreams and expectations for your child. The reality is that everyone wants their child to be perfect. We're here to help achieve that," said Dr. Sadove. "I'm blessed to have this opportunity to work with my craniofacial team colleagues to help people."

For Ben, that help - along with strong family support - has meant life as a confident, active boy.

"Ben looks great, and he's really taking charge," said Sherman. "When we go to clinic now, it's his visit, not my visit. He asks questions, and he talks to the doctors."

"I just ask how long will I be here. How long will it take?" Ben said with a chuckle. "That's it!" Spoken like a young man with places to go and things to do.