By Jeffrey Lewis, MD, DMD
Cleft lip and palate are common birth defects, occurring in about 1 in 800 births in the U.S. Each year, on average, three to five babies with cleft lip, cleft palate, or both are delivered at Cayuga Medical Center. An estimated five or six more babies are born elsewhere in the region and another handful of young children with cleft abnormalities move to Tompkins County with their families.
Cleft lip is a split or opening in the upper lip-usually on one side or the other-which may extend up to the nose. Of the babies born with cleft lip, almost half also have cleft palate, which is a gap in the roof of the mouth along the midline. In some cases, the upper gum has a notch or an opening as well. Most of these children have multidisciplinary issues, related to feeding, speech and language development, and appearance. They may need between five to ten operations, from infancy to adulthood, to correct deformities of the lip, mouth, and nose. Some have additional birth deformities, hearing loss, neurological deficits, and problems relating to other organ systems.
In 1996, we organized a group of Tompkins County medical and health-care specialists to form the Cleft Palate and Facial Deformities Team, at Cayuga Medical Center. We discovered that, although local medical and therapeutic expertise was plentiful and of the highest caliber in our community, there were still children and adults with facial deformities and clefts whose needs were still not being met. The services required to address the scope of their needs often overwhelm families. By organizing the channels of communication between specialists in the medical community and families, we knew we could make a difference for these families.
About the team
The Cleft Palate and Facial Deformities Team includes approximately twenty experienced specialists in oral and maxillofacial surgery, plastic surgery, pediatrics, ear-nose-throat, maternal-child nursing, lactation specialists, pediatric dentistry and orthodontics, audiology, speech and occupational therapy, developmental psychology, the early intervention program, social work, parent support, and genetics. We meet on a regular basis at Cayuga Medical Center.
Twice a year we hold clinics at the medical center at which we typically see about twelve children. Following the clinic, team members meet to discuss their evaluations of each child and to develop treatment recommendations. These recommendations are then compiled in a written report, which I review with the family and share with the child’s primary-care physician and others who are involved in the child’s care. Recommendations relating to therapy and education are shared with the child’s school.
Because we believe it is best for every child to receive the care he or she needs, members of the team participate on a voluntary basis. We make sure that evaluation and treatment options are available regardless of a family’s financial resources. This means that children with complex treatment needs from families with insufficient resources receive the same level of care as those whose families have adequate coverage.
At Cayuga Medical Center, our initial contact with newborns and families occurs on the same day a baby is born with facial deformities. The director of Maternal-Child Care and I both meet with the infant’s parents to evaluate the infant and to provide assurance, support, and information. We begin the coordination of services right away. Often, the first intervention is to help with breast-feeding.
For children who are past infancy, the best way to initiate the coordination of services is to call my office at (607) 277-7007. A number of children have been referred to the team by the school system or other health-care providers; some are children who have moved here with their families and are in search of a unified treatment team. We are eager to provide services to children of all ages, and we treat adults, as well.
If you call us needing help, the answer will be yes. We will see your child right away and get you involved with the team and the clinic. Since we began the Cleft Palate and Facial Deformities Team in 1996, we have evaluated more than 100 children and a number of adults with cleft lip, cleft palate, and other deformities. We’ve had real success: the post-operative photos tell the story. Our initial infants from 1996 are now in school leading happy, normal lives.
Dr. Lewis is board certified in facial cosmetic surgery and oral and maxillofacial surgery and is a faculty member at the University of Rochester School of Medicine and Dentistry. He serves on the medical staff of Cayuga Medical Center and chairs the Cleft Palate and Facial Deformities Team. His practice is Cayuga Facial Surgery and he can be reached at (607) 277-7007.