Mighty Blog

The Kid Experts bring cleft lip and palate patients and families together for a day of fun and connection

An estimated one out of every 1,000 children are born with a cleft lip. Roughly 70% of these children will also have a cleft palate. At that rate, a child often finds they are the only one in their community or school with a cleft lip or palate.

It’s important for these families to have opportunities to connect and share their experiences. Keri, a nurse at Children’s Minnesota’s St. Paul hospital, her husband, Dale, and their two children, Sean and Liam, know the power of those connections.

Sean and Liam

Eleven-year-old Sean was born with a bilateral complete cleft lip and palate. It required several interventions over the course of his life, including early bottle-feeding adaptations, a dental retainer and numerous surgeries, including cleft lip surgery and palate surgery within his first year of life. When Sean was 5 years old, Dr. Brianne Roby, medical director of the Cleft program at Children’s Minnesota, discovered he had a cholesteatoma, a growth behind the eardrum. That meant Sean had to have surgery every six months to preserve his eardrum bones. More recently, he had surgery to elongate the connecting piece of his nose.

Younger brother, 9-year-old Liam, was also born with a cleft lip, though not as significant. He had one surgery when he was only a few months old.

Sean at cleft camp.
Sean (left), Liam (right)

Camp experience

For roughly 10 years, the family has attended a summer camp for children with a cleft lip or palate and their families. The camp was an opportunity for families going through similar experiences to meet, connect and support one another. It’s reminded Keri, Dale, Sean and Liam that they are not going through this alone.

“As parents, we get to talk to other families, about what we experience, what works, doesn’t work and how we all navigate different things. Our kids get to see so many other kids who look like them,” described Keri.

Sean and Liam enjoyed all the activities camp had to offer like rock climbing, archery, swimming and horseback riding.

Providers from Children’s Minnesota’s Cleft and Craniofacial programs also attended the camps, including Dr. Roby and Dr. Robert Tibesar, medical director of the Craniofacial program. They’ve participated in discussions with other cleft families and joined in on the activities. “It’s really cool for the kids and families to see the physicians and surgeons out there too and get a chance to talk with them – it’s like seeing your teacher out of class,” said Keri.

Today, both boys are doing amazingly well, thriving in school and in their extracurricular activities.

Cleft and Craniofacial Family Fun Day

This year, our Cleft and Craniofacial Clinic is inviting patients and families to a Family Fun Day. It takes place on July 17 at the Bryant Lake Regional Park. Participants include children ages 5 and up and their parents or caregivers. Planned activities include fishing, geocaching and log rolling. Dr. Tibesar came up with the idea of organizing this year’s Family Fun Day.

“I want to give patients and families the chance to meet each other, network and provide support to one another in a healthy way,” Dr. Tibesar said.

Lunch will be generously provided by Children’s Minnesota’s Foundation partners, including KLS-Martin, Stryker, and Childrens Surgery International.

“We are grateful for our donors’ generosity. Our Foundation partners were happy to contribute to provide this opportunity for our patients,” said Dr. Roby.

Families can register at here.