baby with parents

Cleft & Craniofacial Program

We offer care and treatment for kids with all kinds of craniofacial differences, like cleft lip, cleft palate, and more complex conditions.

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About us

Our Cleft and Craniofacial program provides comprehensive, coordinated care for children with cleft lip, cleft palate, Robin sequence and all related craniofacial conditions.  Our team approach brings together pediatric specialists involved in the care of children with clefts and craniofacial syndromes.  

baby with cleft lip

About cleft lip and 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.
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Our approach to care

Surgical Timeline

Our unique timeline is possible because of the new surgeries and orthodontic techniques our cleft team has developed over the past 20 years. Our mission is to make our patients’ lives better by improving cleft care.

We finish all cleft repairs, except for the final nose work, by the age of 3 years old. This helps restore the face’s normal form, and function before kids start school.  While additional surgeries are possible, our timeline decreases the need to miss school for surgeries. We strive to help children with a cleft have a more enjoyable, less stressful childhood.

How do we do this and why is it so special?

Our hard palate prosthesis and staged approach to palate repair set us apart.

The hard palate prosthesis, made by our craniofacial orthodontists, fills in the hole in the roof of the mouth (hard palate) and brings the sides (shelves) the roof of the mouth back to their correct position. It acts as a temporary roof of the mouth and helps with the development of normal speech and improved feeding until the hard palate is repaired. 

Moving the hard palate shelves makes the remaining cleft palate very narrow. This makes it easier to close and leaves less scarring than a traditional palate repair. Repairing the hard palate later gives the upper jaw (maxilla) more time to grow before surgery. Both later surgery and less scarring are thought to help with the growth of the upper jaw, which is a common concern in children with clefts.

Also, by correcting the hard palate anatomy, we can combine hard palate and gumline repair (also known as alveolar cleft).  This combined surgery allows us to fill in the missing bone in the gumline and the hard palate. This restores all bone that was missing due to the cleft. The nose will be supported as it grows, the roof of the mouth will stay the right width, and the adult teeth can develop correctly. 

We know that every child is unique. Our team partners with you to determine the right treatment pathway for your child. 

Treating cleft lip and palate

We coordinate surgery timing to work best with your child's development, taking into account their dental, educational, and social development.

It is important that your newborn is evaluated upon birth by a feeding specialist and within the first week of life by our craniofacial plastic surgeons, craniofacial orthodontists, and nursing to determine a plan for treatment. Sometimes preoperative treatments like lip taping and nasoalveolar molding (NAM) need to begin before surgery, this can make cleft lip repair easier and help get a better result.

Feeding a baby with a cleft lip or palate can be very different but we are here to help every step of the way. We will work with you to develop a care plan that is best for you and your child. 

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.

We will provide recommendations for you and your child’s care and offer options for specialized bottles and nipples to help your baby feed with a cleft lip/palate. 

Surgery is performed for cleft lip repair and placement of hard palatal prosthesis. Sometimes ear tubes are also placed during this procedure. Surgery is usually about 3 hours, and your child will spend 1-2 nights in the hospital.

Surgery is done for soft palate repair and exchange of the hard palate prosthesis. Ear tubes may also be placed at this time. Surgery is usually about 2.5 hours, and your child will spend 1-2 nights in the hospital.

The hard palate prosthesis will be removed, this is usually done in a 30-minute outpatient procedure. About 3-4 weeks later, surgery is performed to do a hard palate repair and alveolar cleft repair with bone grafting (with cadaver bone and bone grafting protein). This surgery is about 3 hours long, and your child will spend 1-2 nights in the hospital.

Septorhinoplasty is performed to optimize the function of the nose, this is usually a 3 hour surgery with one night in the hospital.

We work to accomplish most of the necessary surgeries before your child is school-aged, and if surgeries are needed during this time we are able to plan to minimize school disruption. Depending on your child’s specific needs, they may need to plan on some of these procedures:

  • 4-6 years old: Speech surgery (if needed), which is usually about a 2-3 hour procedure, with 1-2 nights in the hospital.
  • 5-6 years old: Minor lip revisions (if needed), which is usually done in a 1 hour outpatient surgery.
  • 5-6 years old: Tip rhinoplasty (if needed), which is usually done in a 1 hour outpatient surgery.
  • 5-7 years old: Alveolar bone graft augmentation (if needed), which is usually about a 1-2 hour procedure, with 1-2 nights in the hospital.
  • 9-15+ years old: Jaw surgery (if needed), which is usually a 3-4 hour surgery, with 3-4 nights in the hospital.
 

What sets us apart

One of the leading programs in the nation, we bring decades of experience and are proud to be nationally accredited by the American Cleft Palate-Craniofacial Association for more than 20 consecutive years.

20+

consecutive years accreditation

350+

surgeries performed each year

80+

years combined surgical experience

ACPA Approved Logo

The right team

By working with specialists in plastic surgery, ENT, orthodontics, neurosurgery, anesthesia, and more, we provide complete care for your child with a craniofacial condition.

Experienced cleft program

We bring decades of experience to you and your child, providing the best care for your family. Combined, our providers have more than 80 years of experience and perform, on average, 350 cleft and craniofacial surgeries each year.

All providers are board-certified/eligible and fellowship-trained in pediatric subspecialties

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 Hospital is ranked as a best children's hospital in all 11 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.

Conditions we treat

We help care for and treat the following conditions:

  • Cleft lip and 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.
  • Robin sequence
    Also called Pierre Robin Sequence, this disorder presents with a very small lower jaw, cleft palate (opening in roof of the mouth) and possible difficulty breathing 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 (a mound of tissue with hole in center) and cleft lip, cleft palate or both.
  • 22q11.2 deletion syndrome
    22q11.2 deletion syndrome, also known as DiGeorge syndrome, is a genetic disorder that affects how different parts of the body develop. People with this syndrome can have a variety of symptoms, even if they are in the same family. It can cause problems with the heart, immune system, mouth, and calcium levels in the blood.
  • Ocular-Auricular-Vertebral spectrum (OAVS)
    A genetic disorder that involves changes or birth defects of the eyes, ears, and spine. Persons who have OAVS can have a mild presentation to a more involved presentation (called Goldenhar syndrome).
  • 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. Patients can have a mild presentation to a more involved presentation.
  • Treacher Collins syndrome
    A genetic condition that mainly affects development of the face as well as causing defects of the eyes and ears. The cheek bones are underdeveloped and the lower jaw is very small. Patients may have a cleft palate (opening in the roof of the mouth). Patients can have a mild presentation to a more involved presentation.
  • Nager syndrome
    A rare genetic condition that mainly affects the development of the face, ears, arms and hands. 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).
  • Apert syndrome
    A genetic disorder that affects how the bones of the skull and face are shaped and grow. These patients also have craniosynostosis which is the early closure of the sutures (seams) that separate the bones of the skull. 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. These patients also have craniosynostosis which is the early closure of the sutures (seams) that separate the bones of the skull.
  • Pfeiffer syndrome
    In this syndrome, patients have abnormalities of the bones of the skull, face, hand and feet. These patients also have craniosynostosis which is the early closure of the sutures (seams) that separate the bones of the skull.

The Cleft & Craniofacial clinic team

Learn about the roles of our team members and how they work together.

Plastic surgeons specialize in repairing birth defects such as cleft lip and palate. They use various surgical techniques to restore both form and function in the affected areas. By providing expert care, Plastic Surgeons help children achieve improved appearance and functionality, enhancing their overall quality of life.
Craniofacial orthodontists are experts in treating children with cleft lip, cleft palate, and other facial differences. They use techniques like lip taping and naso-alveolar molding (NAM) before cleft lip repair. By working closely with a multidisciplinary team, Craniofacial Orthodontists develop coordinated treatment and surgical plans to ensure the best outcomes for their patients.
Pediatric Otolaryngologists, also known as an ENT, specializes in diagnosing and treating conditions related to the ear, nose, and throat in children. These experts manage a wide range of issues, including hearing problems, airway disorders, and speech difficulties. By providing comprehensive care, Pediatric ENTs ensure that children receive the best possible treatment for their unique needs, helping them to hear, breathe, and speak more effectively.
Speech Language Pathologists, often referred to as speech therapists, specialize in assessing and treating speech, language, swallowing, and feeding issues in children. These professionals work with young patients to improve their communication skills and ensure they can eat and drink safely. In the Cleft & Craniofacial clinic, they provide recommendations and referrals for early intervention services as well as speech and feeding therapy.
Registered Dietitians specialize in assessing and managing the nutritional needs of children. They monitor growth and development, ensuring that each child receives the optimal nutrition for their health and well-being. By evaluating dietary intake and making personalized recommendations, Registered Dietitians help children achieve healthy growth and development, addressing any nutritional concerns along the way.
Pediatric nurse practitioners assess growth, feeding, general wellness, and readiness for surgery. They work closely with clinic team members, parents, and the patient’s primary care provider.
Nurse Coordinators play a vital role in ensuring seamless care for children and their families. They assist in coordinating services and follow-up appointments, clarifying the next steps at the end of each visit. Nurse Coordinators provide treatment plans and visit summaries, helping the healthcare team work together to deliver coordinated and comprehensive care for your child.
Social Workers are dedicated to supporting the financial and social needs of children and their families. They assess each family's unique situation and provide assistance and information about available resources. By addressing specific needs, Social Workers help ensure that families receive the support they need to navigate their child's healthcare journey.
Psychologists specialize in evaluating the mental, social, and cognitive development of children. They provide assessments and, based on their findings, can make referrals for services such as psychoeducational testing and counseling. By addressing the psychological needs of young patients, Psychologists help support their overall well-being and development.
Medical geneticists specialize in understanding the interaction between your child’s genes and their health. They evaluate, manage, treat, and counsel patients and families at risk for or diagnosed with a genetic condition. Their evaluation includes reviewing the medical history, conducting an in-depth physical examination, and discussing recommended genetic testing.
Operation Smile

Operation Smile

We are proud to partner with Operation Smile to provide cleft care for kids in developing countries. Our team is committed to improving cleft care for kids both locally and across the world.

Featured locations

Primary Children's Hospital Cleft & Craniofacial Program - Layton