Cleft and Craniofacial Program

One of the Leading Programs in the Nation

Our Cleft Palate and Craniofacial Program provides comprehensive, coordinated care for children with Cleft Palate, Cleft Lip, Robin Sequence and all related craniofacial conditions. Our multidisciplinary, team approach brings together specialists from plastic surgery, ENT, orthodontics, neurosurgery, anesthesia and many other specialties. Our center is accredited by the American Cleft Palate Association (ACPA) and has the resources and support of nationally ranked, free standing children's hospital.

Our clinics are available in multiple locations along the Wasatch Front and can even be accessed from longer distances through telehealth clinics. We provide care to children from across the country and are contracted with nearly all insurance plans. 

What Sets Us Apart

Utah's Longest Running, Most Experienced Cleft Program

Combined, our providers have more than 80 years of experience and perform, on average, 350 cleft and craniofacial surgeries each year.

Nationally Accredited Program for More Than 18 Years

Our program is accredited by the American Cleft Palate-Craniofacial Association and has been for 18 consecutive years. This accreditation ensures that teams are comprised of experience professionals that coordinate care with the proper sequencing of evaluations and treatments.

All Providers Are Board Certified/Eligible and Fellowship Trained in Pediatric Subspecialties

We are the only program in Utah where every provider in our center is board certified/eligible and fellowship trained in pediatric specialties. Children are not just little adults, so having this additional training and expertise in crucial to cleft and craniofacial treatment.

Innovative Care with the Latest Research

Our partnership with University of Utah Health ensures that your child will receive the most innovative, evidenced-based care available.

Expertise and Care of Nationally Ranked Children's Hospital

Primary Children's is 1 of 24 children's hospitals in the country to rank as a best children's hospital in all 10 pediatric specialties by U.S. News & World Report. Care in our programs, gives your child access to more than 800 experienced pediatric providers across 60 specialties.

 

Cleft Palate and Cleft Lip (with or without cleft palate)

Cleft palate and cleft lip (with or without cleft palate) are the most common craniofacial conditions we treat. In these conditions, a baby’s lip and/or roof of the mouth (palate) don’t form properly during pregnancy. As a result, there is an opening (cleft) that may involve the lip, floor of the nose, gum line (alveolus), and palate.

Initial Evaluation

It is important that your newborn is evaluated upon birth by a feeding specialist and within the first week of life by our craniofacial surgeons and craniofacial orthodontist to determine if preoperative treatment with lip taping and nasoalveolar molding (NAM) need to be initiated. The goal of the molding is to make the gap in the lip smaller and improve the shape of the nose. This will make cleft lip repair easier and likely allow getting a better result.

Surgery Timing

The surgeries your child will need depend on the presence and the severity of the cleft (cleft lip only, cleft palate only, or both). Our general protocol is outlined here, but please keep in mind that our team will develop a personalized plan of care for your child that will minimize the number of operations while obtaining the best possible aesthetic and functional results.

  • 3 months old: Cleft lip repair and placement of a hard palate retainer
  • 10 months old: Soft palate repair (back part of the palate)
  • Between 10 months and 3 years, as your child grows, he/she will need replacement of hard palate retainer
  • 2-3 years old: Hard palate repair (front part of the palate) with possible bone grafting to palate and alveolus (gum line)
  • Prior to starting school (5-6 years old): Any minor lip or nasal revisions that may be needed
  • 6-8 years old: If your child was not able to have bone grafting done to the alveolus at the time of hard palate repair, he/she will need this done now
  • 9-10 years old: Your child may need upper jaw surgery if a large underbite is present
  • 16-18 years-old: Upper and/or lower jaw surgery to correct the bite if necessary, and rhinoplasty (nose surgery) to correct any residual nasal deformity

Ear tubes will be placed, if your child needs them, at the time of the cleft lip or the cleft palate repair. If your child has persistent speech problems that cannot be corrected with speech therapy, he/she may need an additional intervention to help correct these issues. 

 

Feeding

Feeding a baby with a cleft lip or palate is different.

With cleft lip and/or palate, the infant: 

  • Can't create a seal with the lip and tongue to latch onto the nipple.
  • Can't push the tongue and nipple against the roof of the mouth to create suction.
  • Can't move milk to swallow it.

There are specialized bottles and nipples to help babies with cleft lip/palate feed. Specialists at the hospital where the baby is born can help parents learn how to feed their babies using these specialized bottles and nipples. You can contact the Cleft Nurse Coordinator at 801-662-1630 if you have questions about feeding, the specialized bottles and nipples, or concerns about how your baby is feeding.

Conditions We Treat

Cleft Lip and Palate related conditions

Craniofacial conditions that affect facial and ear development 

Craniosynostosis syndromes and related conditions

  • Apert Syndrome
  • Crouzon Syndrome
  • Pfeiffer Syndrome