Center Brings Coordinated Expertise and Hope to Young Patients With Cleft Lip

When Charmella Prince went to an area hospital for her 20-week pregnancy ultrasound, she knew what to expect. Already a mother of three, Charmella was excited to learn the gender of her baby. But her excitement suddenly changed when she learned that her unborn baby girl had the congenital defect cleft lip and palate – when the tissues around the mouth do not form correctly.

“We were devastated. We just sat in the hospital hallway and cried,” says Charmella about herself and the baby’s father, Eddie McGraw. “I was so afraid of what was to come – how I would feed her, how she would look, how other people would view and judge her.”

Care begins after in utero diagnosis

Charmella transferred to University Hospitals MacDonald Women’s Hospital for specialized care. There, her doctors referred her to University Hospitals Rainbow Babies & Children’s Hospital’s Cleft & Craniofacial Center. The Cleft & Craniofacial Center team, which is nationally accredited for excellence in care, specializes in the comprehensive care and treatment of children with cleft lip and palate, as well as other craniofacial deformities.

“Although treatment does not begin until after the baby is born, we work closely with parents who have a diagnosis in utero,” explains Randi Leuchtag, RN, BSN, Craniofacial Team Nurse Coordinator. “The prenatal staff at UH MacDonald Women’s Hospital brings expectant parents of children with these defects to the Cleft & Craniofacial Center so that they can meet our staff ahead of time. This continuity of care helps parents prepare for next steps.”

Charmella’s visit to the center helped put her mind and heart at ease. “I learned what I could expect and how the team would help my daughter. I also saw before and after photos of babies with cleft lip and palate who were treated at the center. It made me feel so much better to know there was light at the end of the tunnel,” says Charmella.

Patients benefit from multidisciplinary team

Cleft lip and palate is not only a disfigurement that requires multiple surgeries, it also often leads to feeding and swallowing issues, ear infections, poor jaw and teeth development, speech problems and low self-esteem. As a result, UH Rainbow Babies & Children’s Hospital’s Cleft & Craniofacial Center has a multidisciplinary team of specialists who provide ongoing care throughout a patient’s childhood.

“We offer one of the most comprehensive centers for cleft lip and palate in the United States,” explains Gregory Lakin, MD, Director of the Cleft & Craniofacial Center and Chief of Pediatric Plastic Surgery at UH Rainbow Babies & Children’s Hospital. “This birth defect requires highly coordinated, complex treatment, and our clinic is designed to make this as easy as possible for families.”

Twice a month, the Cleft & Craniofacial Center holds a clinic where patients and their families meet with the entire team. Team members include experts in plastic surgery, neurosurgery, oral and maxillofacial surgery, pediatric dentistry, orthodontics, ophthalmology, speech, genetics, developmental pediatrics, psychology, social work, ENT, audiology, physical and occupational therapy, sleep medicine and nutrition.

“Families attend a clinic once a year and meet individually with each provider,” explains Dr. Lakin. “By working together, we offer one time-saving day for our patients.”

After the clinic, the team meets to discuss each patient and create a comprehensive, individualized treatment plan with specific follow-up instructions for the family.

Expert care provides results

The center’s coordinated effort gave Charmella confidence when her daughter, Journey, was born. While still in the hospital, she received special help learning how to feed her baby. She also learned how to prepare her daughter for her first surgery, which she had at 3 months. Now age 1, no one can tell Journey had a defect.

“The results of her surgery are amazing,” says Charmella. “I know we have a long road ahead, but I let UH Rainbow Babies & Children’s Hospital lead me. I know she is going to have a good life.”