Apert Syndrome

What is Apert syndrome?

Apert syndrome, also known as acrocephalosyndactyly, is a genetic disorder characterized by deformities of the skull, face and limbs. 

Apert syndrome may include:

  • Craniosynostosis: A condition in which the fibrous joints, called sutures, between the bones of the skull fuse too early during a child’s development, changing the shape of the head and potentially increasing pressure on the brain.

  • Midfacial hypoplasia: Decreased growth of the central face. This causes a sunken facial appearance and may cause difficulty breathing,called sleep apnea

  • Syndactyly: Fusion of the fingers and/or toes

Other features of the disorder may include:

  • Prominent eyes

  • Crowded teeth

  • Cleft palate

  • Hearing loss

  • Fused spinal bones

  • Severe acne

Apert syndrome can occur between 1 out of every 60,000-80,000 births.

Download our Apert Syndrome Guide

How we care for Apert syndrome

Having a child born with Apert syndrome may feel over¬whelming. Knowing your child will need medical care from a large team of doctors and clinicians is a lot for any parent to process. We hope you find comfort knowing that the Craniofacial Program at Boston Children’s Hospital is a national leader in the treatment of children with Apert syndrome.

Families seeking the very best care for their child come to Boston Children’s for our:

  • Nationally recognized care: U.S.News & World Report ranks Boston Children's Hospital higher in more specialties—including neurosurgery—than any other children's hospital in the country.

  • Surgical expertise: Our surgeons are experience in multiple surgical techniques, allowing us to develop a specific treatment plan to best fit your child’s individual needs. Learn more about Apert syndrome treatment.

  • Research and innovation: Our clinicians are involved in research that moves us closer to a better understanding of—and treatment for—all deformities of the head and face. Learn more about our craniofacial research.

  • Team approach: Our Craniofacial Program includes some of the world’s most experienced neurosurgeons, plastic surgeons, oral and maxillofacial (jaw) specialists, dentistry professionals, psychologists and social workers—all working together to address the many needs of your child and your entire family. Meet our craniofacial team.