Craniosynostosis

In the midst of all of the joy you feel as a new parent, learning that your child has a craniofacial deformity—especially one that may require surgery—can be overwhelming. Your list of questions may seem endless: What exactly is craniosynostosis?How serious is it? Is my child at risk for developmental problems? How will this affect his daily life? 

Learning the basics about craniosynostosis is a good first step. 

• Craniosynostosis is a condition in which the fibrous joints, called sutures, between the plates of the skull fuse too early during a child’s development.
• A child with craniosynostosis may have problems with brain and skull growth, possibly leading to developmental delays and cognitive impairment.
• Some children with craniosynostosis develop abnormally high pressure inside the skull, called intracranial pressure. This can cause serious neurological complications if left untreated.
• Craniosynostosis can cause a misshapen appearance of the head and skull.
• Craniosynostosis is often noticeable at birth, but can also emerge in older infants.
• Sometimes, it runs in families—but most often, it appears to occur randomly.
• Craniosynostosis affects more boys than girls.
• Many infant skull shape irregularities are actually due to a condition called plagiocephaly—which is related to the baby’s position during sleep—and not craniosynostosis. Plagiocephaly is a very different disorder, and does not require surgery to treat.
• Surgery is the recommended treatment option for most types of craniosynostosis, in order to help reduce intracranial pressure and correct the deformity. 

How Boston Children's Hospital approaches craniosynostosis

Every year, Children’s treats hundreds of patients—from babies to adults—with craniosynostosis and other skull and facial deformities through our Craniofacial Anomalies Program.

Drawing on our extensive experience treating these disorders, we use a multidisciplinary approach to ensure the right treatment for your child's individual symptoms and circumstances.

Members of our Craniofacial Anomalies Program team include pediatric:

• neurosurgeons, who perform surgical procedures on a child’s brain, spinal cord or nerves
• plastic surgeons, who diagnose and surgically correct skeletal abnormalities of the skull, facial bones and soft tissue
• geneticists, physicians who evaluate cases of craniosynostosis to determine whether they are part of an inherited or syndromic condition
• neurologists, who diagnose, treat and manage conditions affecting the nervous system
• oral and maxillofacial surgeons, whouse surgical procedures to correct injuries or deformities of the mouth, jaws, face and skull
• audiologists, who diagnose, evaluate and implement treatment approaches for a child’s hearing problems
• neuroscience nursing professionals, who combine expertise in all aspects of pediatric nursing with a focus on the neurosciences, and act as liaisons between a child’s family and clinical treatment team
• speech therapists, who evaluate a child’s spoken communicative abilities and formulate treatment plans to enhance and improve speech and language
• physical therapists, who help children recover, return to their previous level of function or learn to work within their functional limitations
• dentists, who maintain a child’s oral health 
• orthodontists, who evaluate the position and alignment of a child’s teeth and help design corrective treatment plans as needed
• psychiatrists, who assess a child’s psychosocial functions and behavioral development and can prescribe psychiatric medications if necessary
• psychologists and social workers, who help children and families express and cope with feelings like worry, fear, frustration, anger and sadness
• genetic counselors, who review medical and family histories, help diagnose craniofacial anomalies that may be inherited and advise families 
• otolaryngologists, who are “ear-nose-throat specialists” who help manage a child’s ear infections, hearing loss and other related issues that may be tied to a craniofacial abnormality
• ophthalmologists, who evaluate vision problems and formulate medical or surgical treatment plans to improve or restore vision 

Working together, our team will develop a customized treatment plan that meets your child's physical, emotional and social needs—one that involves you and your family at every step of the way.

Craniosynostosis: Reviewed by Mark R. Proctor, MD
©Children’s Hospital Boston; posted in 2011