The Center for Disease Control reports that approximately 1,600 babies in the U.S. will be born every year with a cleft lip or cleft palate. The diagnosis can be devastating for families as they navigate the unique medical and psychological needs of their baby.
The team at the Snyder Family Cleft & Craniofacial Center at Wolfson Children's Hospital in Jacksonville, one of only five centers in the state, has been providing interdisciplinary services and advocacy for children with cleft lips, cleft palates and facial clefts for more than sixty years with almost 500 patients currently in their care from birth to 22-years-old.
“Our community has convened a team of surgeons, pediatricians, nurses, dentists, orthodontists, speech therapists, audiologists, psychologists, and other specialty providers to do only one thing—to bring smiles to the faces of children,” said Jeffrey Goldhagen, M.D. “Led by the partnership of Wolfson Children's Hospital and the Partnership for Child Health, in collaboration with UF, Nemours and multiple community providers, the cleft team has grown to become an accredited ACPA Cleft and Craniofacial Center able to provide comprehensive care to children. And the generous support of the Snyder family makes all we do possible.”
The cleft diagnosis is often made during prenatal care. After the diagnosis is made, our interdisciplinary team engages the family to create a plan and maximize medical, dental and psychological outcomes. “Preparing the parent for what’s to come, educating them about clefts, feeding challenges and supporting their emotional needs is a very important first step,” said Carissa Heck, LCSW. "It is well documented that feeding problems are prevalent in infants diagnosed with a cleft lip or palate that can lead to inadequate caloric intake, increased energy expenditure with feeding and delayed surgical interventions”.
Cleft surgeries have been providing children in Jacksonville with a lifetime of smiles since 1960. Baby Troy was diagnosed with a small lower jaw and a cleft palate, which initially created breathing problems. Following the ACPA guidelines the team was able to see him within the first week of life to develop a treatment plan. “Initial team follow up is critical for the newborn’s optimal development, as well as aiding the parents understanding of the newborns needs in relation to his cleft diagnosis,” said Lida Sarnecky, Program Nurse Manager. “Prior to surgery, Baby Troy had tremendous sleep apnea and now his Mom says he sleeps as quiet as a mouse.”
Since 2012, the center receives funding through the Partnership for Child Health from the Edward and Lizbeth Snyder Pediatric Cleft & Craniofacial Endowment in collaboration with Wolfson Children’s Hospital. The team consists of professionals from the University of Florida College of Medicine, Jacksonville Department of Pediatrics, Nemours Children’s Specialty Care, and community professionals.
