Cleft and Craniofacial Program

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 20 Years

Our program is accredited by the American Cleft Palate-Craniofacial Association and has been for 20 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) 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 palate repair with possible placement of a hard palate retainer (prothesis) if patient has cleft of the hard palate.
• 10 months old: Soft palate repair (back part of the palate)
• Between 10 months and 3 years, as your child grows, they may need replacement of hard palate retainer if one was previously placed.
• 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. 

 

Cleft Lip and Palate related conditions

• Cleft Lip and Palate
• Pierre Robin Sequence
  •  Also called Pierre Robin Sequence, this disorder presents with an abnormally small lower jaw, cleft palate (roof of mouth) and possible airway obstruction from the tongue position in the back of the mouth. 
• Stickler Syndrome
  • A genetic disorder that affects the connective tissue of the body. Children with this syndrome will often have problems with vision, hearing, face and skeleton development and cleft palate (opening in the roof of the mouth).
• Van der Woude Syndrome
  • This syndrome is caused by a mutation in the IRF6 gene and is a common inherited form of cleft lip and/or palate (opening in the lip and/or the roof of the mouth). Children with Van der Woude Syndrome have lower lip pits (mound of tissue with hole in center) and cleft lip, cleft palate or both.
• 22q11.2 Deletion Syndrome

Craniofacial conditions that affect facial and ear development 

• Oculo-Auriculo-Vertebral Spectrum
• Treacher Collins Syndrome
• Nager Syndrome 
  • A rare genetic condition that mainly affects the development of the face, hands and arms. The cheek bones are underdeveloped and the lower jaw is very small. Many children will have a cleft palate (opening in the roof of the mouth). The severity of the disorder varies from child to child.
• Craniofacial (Hemifacial) Microsomia
  •  This condition can range from mild to severe and causes half of the face to be underdeveloped and look different from the unaffected side. The ear and lower jaw are most commonly affected. 

Craniosynostosis syndromes and related conditions

• Apert Syndrome
  • A genetic disorder that affects how the bones of the skull and face are shaped and grow. Craniosynostosis, which is early closure of the sutures (seams) that separate the bones of the skull, is also seen. The child will also have fusion of the digits of the hands and feet (syndactyly).
• Crouzon Syndrome
  • A genetic disorder that affects how the bones of the skull and face are shaped and grow. Craniosynostosis, which is early closure of the sutures (seams) that separate the bones of the skull, is also seen.
• Pfeiffer Syndrome
  • In this syndrome, abnormalities of the bones of the skull, face, hand and feet are seen. Craniosynostosis is the early closure of the sutures (seams) that separate the bones of the skull.