A guide released by University of Utah Health recently detailed the management of cleft lip and palate in infants, noting that while a diagnosis can be overwhelming for parents, these conditions are highly treatable. Dana Johns, MD, an associate professor in the Division of Plastic Surgery at University of Utah Health and a plastic surgeon at Intermountain Health Primary Children's Hospital, stated that globally, approximately one in every 700 babies is born with a cleft lip, a cleft palate, or both.
Utah's high prevalence rates
In Utah, the prevalence of these conditions significantly exceeds national statistics. While the United States sees about one in 1,000 babies born with clefts, the rate in Utah is approximately 1 in 550, nearly double the national average. Dr. Johns noted that while researchers have investigated genetics, environment, and altitude as potential factors, the reason for this disparity remains unknown.
Defining cleft lip and palate
A cleft lip involves an opening in the upper lip, whereas a cleft palate is an opening in the roof of the mouth. These conditions develop during pregnancy when tissues fail to fuse completely. While cleft lips are often detectable via ultrasound before birth, isolated cleft palates can sometimes be discovered during delivery.
Multidisciplinary treatment and surgical needs
Treatment typically involves a multidisciplinary craniofacial team including plastic surgeons, orthodontists, feeding specialists, speech therapists, and social workers. Most children require between eight to 20 surgeries over time. University of Utah Health utilizes a protocol intended to complete major repairs by age 2.5 years.
The surgical timeline and stages
The surgical timeline often begins shortly after birth with lip taping and feeding evaluations. Subsequent stages may include cleft lip repair between three to five months, soft palate repair between 10 to 12 months, and hard palate repair or bone grafts between two to three years. Additional revisions may occur during the teenage years if an underbite is present.
Managing infant feeding challenges
Feeding challenges are common for infants with a cleft palate because they cannot create suction for breastfeeding. Specialists at University of Utah Health assist families by teaching them to use specialized bottle systems, such as Dr. Brown’s specialty bottles, Pigeon nipples, or Haberman feeders.
Long-term outlook for patients
Dr. Johns emphasized that children with these conditions often grow up to lead full and active lives, developing resilience through the various stages of care which can span approximately 18 years.
