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Pediatric Craniofacial Disorder

What is a craniofacial disorder?

"Craniofacial disorder" is a broad term that describes malformations of the face and skull that may result from birth defect, disease or trauma. In the US, approximately 600,000 individuals have been diagnosed with a craniofacial condition, and Children’s treats hundreds of patients with these disorders each year.

Among the conditions seen most frequently at Children's:

  • Cleft palate/Cleft lip — An abnormality in which the lip or mouth's palette doesn't close properly before birth and has to be fixed surgically.
  • Misshapen heads — There are different disorders that can cause the skull to be misshapen. Among them:
  • Positional plagiocephaly
  • Simple craniosynostosis
  • Hemifacial microsomia
  • Syndrome disorders — A syndrome is a disease or disorder that has more than one identifying feature or symptom. There are a number of syndromes specifically affecting head/facial disorders, including Crouzen, Apert, Pfeiffer, Saethre-Chotzen, Carpenter, and Cloverleaf syndromes.
  • Trauma — The face or skull also can be damaged through accident and injury.

Individual Conditions

Cleft palate is a birth abnormality that affects about one in every 2,000 newborns and is more common in boys. (A lesser-discussed but similar condition, cleft lip, affects about one in every 1,000 births). The palate is the inner, underside of the mouth. When the palate is cleft, it is because the roof of the mouth didn't close together properly during gestation. A newborn may have a large gap in the palate, which may affect the ability to nurse and eventually eat and talk. Most babies with a cleft palate or lip are otherwise healthy. They may experience some problems until the cleft is repaired like feeding difficulties and ear infections.

Positional plagiocephaly is the most common of the head deformities called "positional" deformities. In positional plagiocephaly, the child's head often looks like a rectangle when viewed from above. Repeated pressure to the same area of a newborn's very pliable skull can cause the head to be deformed, sometimes with distinct differences between the right and left side of the face.

Simple craniosynostosis – Natural sutures are joints between skull bones that hold the skull together, but that also grow as the skull grows. In children with normal development, the sutures eventually fuse together. Craniosynostosis occurs when the sutures fuse too soon before growth is complete. The result is a skull that is not normally shaped, with pressure on the growing brain that is trapped in a too-small structure.

Hemifacial microsomia (HFM) is a condition in which the tissue on one side of the face is underdeveloped, affecting primarily the ear, mouth and jaw. Sometimes, both sides of the face can be affected and may involve the skull, as well as the face. HFM is the second most common birth defect after clefts.

Syndrome disorders are complex congenital disorders that frequently result in multiple symptoms that require comprehensive care from an interdisciplinary team.


Children's advanced surgical repairs

Children with deformities involving the growth of the head and face often have multiple problems that require the expertise of a multidisciplinary team. The Craniofacial Program at the Children's National Health System brings together a staff of 12 pediatric experts from 10 disciplines. Together in one location, the program includes pediatric specialists in:

  • Neurosurgery
  • Oral surgery
  • Audiology
  • Dentistry
  • Psychology
  • Genetics
  • Otolaryngology
  • Speech pathology
  • Orthodontics
  • Ophthalmology

Children's provides the latest advances in craniofacial reconstruction. This includes:

  • Early intervention - The earlier work begins on rebuilding any or all of a child's face, the more likely the changes will grow as the child grows.
  • Minimally invasive surgeries – At Children's we recognize the benefit of minimally invasive approaches which generally mean quicker healing; less risk of damage to surrounding tissue, nerves, arteries or veins; less physical pain and less emotional distress for patients and families.
  • Single-stage repairs – Many craniofacial disorders require more than one surgery, which can be disruptive to families and budgets. Children's is a pioneer in single-stage surgeries—complex procedures completed during one surgery.
  • Continuity – While our patients generally prefer "single-stage" operations, the fact that children are constantly growing means some children will need multiple operations to correct their craniofacial disorders. Children's follows its patients for as long as is needed, frequently into adulthood.

Children’s approach enhances more than appearance
It isn't unusual for children who look different to be teased or bullied, or find social situations difficult. That means the cosmetic benefits of minimally invasive techniques and new materials that absorbable are important for their additional psychological benefits.

It is also why Children’s Craniofacial Disorders Program includes professionals from a number of disciplines, including psychiatry, psychology, social work, speech and physical therapy to help children develop as normally as possible.

Children's Team

Children's Team


Gary Rogers

Gary Rogers

Division Chief, Plastic and Reconstructive Surgery
Marshall Summar

Marshall Summar

Division Chief, Genetics and Metabolism
Director, Rare Disease Institute


Craniofacial Program

The Craniofacial Program at Children’s National brings together experts from 10 pediatric disciplines to provide complete care for children with craniofacial disorders. Our multidisciplinary pediatric team helps more than 400 children every year.

Rare Disease Institute

Children’s National Rare Disease Institute (CNRDI) is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.

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