A guide released by University of Utah Health addresses the challenges parents face when discovering a baby has a cleft lip or cleft palate. While these conditions can be overwhelming, specialists note they are highly treatable and more common than many realize.
Prevalence of Cleft Conditions
According to Dr. Dana Johns, an associate professor in the Division of Plastic Surgery at University of Utah Health, approximately one in 700 babies worldwide is born with a cleft lip, cleft palate, or both. In the United States, the rate is about one in 1,000 babies.
Higher Rates in Utah
However, rates in Utah are significantly higher than the national average, appearing in approximately one in 550 births. While researchers have investigated genetics, altitude, and environment as potential factors, the cause remains unknown.
Defining the Medical Conditions
Cleft lip involves an opening in the upper lip, while a cleft palate is an opening in the palate. Both conditions develop during pregnancy when tissues do not fully fuse. While cleft lips are often detectable via ultrasound before birth, isolated cleft palates can sometimes be discovered at the time of delivery.
Multidisciplinary Treatment Approach
Treatment typically involves a multidisciplinary team including plastic surgeons, orthodontists, feeding specialists, speech therapists, and social workers. Most children require between eight and twenty surgical interventions over many years.
Innovative Surgical Timeline Protocol
University of Utah Health utilizes an innovative protocol designed to complete primary repairs before a child reaches two and a half years of age. The surgical timeline often includes:
Early infancy: Use of adhesive tape on lips and feeding assessments.
Three months: Enrollment in the GROW program for infants with feeding difficulties, overseen by dietitians.
3–5 months: Corrective surgery for cleft lip and placement of a hard palate prosthesis.
10–12 months: Repair of the soft palate.
2–3 years: Hard palate repair and bone grafting.
Adolescence: Upper jaw surgery if necessary for certain facial structures.
Managing Infant Feeding Challenges
Feeding difficulties are common because infants with cleft palates cannot generate suction, making breastfeeding challenging. Specialists recommend specific feeding systems such as Dr. Brown's specialty bottles, Pigeon teats, and Haberman (Medela) bottles.
Dr. Johns stated that although treatment can last through age 18, most children grow up to lead full and active lives, developing strength and resilience throughout the process.
