Craniosynostosis

Craniosynostosis is a serious but treatable condition. Your doctor can detect craniosynostosis when your baby is born. Or, your pediatrician can recognize it in the first few months of your baby’s life during physical exams.

Remarkable Care for Kids

  • Multidisciplinary care: Your baby may receive care at the Rush Craniofacial Center, where a team of craniofacial specialists, including cranionfacial surgeons and pediatric neurosurgeons, work together to correct your child’s craniosynostosis.
  • Nationally ranked programs: The neurology and neurosurgery program at Rush is consistently named one of the top programs in the country by U.S. News & World Report — and many of the doctors in these programs care for children.
  • Surgical expertise: For more than 20 years, the surgeons in the Section of Pediatric Surgery at Rush have provided expert surgical care to babies and children with birth defects, such as craniosynostosis.
  • Genetic testing and counseling: The Section of Genetics at Rush provides genetic counseling, testing and support for families facing genetic disorders linked to craniosynostosis (e.g., Apert syndrome, Pfeiffer syndrome).

What is craniosynostosis?

Craniosynostosis is a rare birth defect that causes a baby’s skull bones to join together earlier than normal in the womb. This interferes with normal growth and development of the head and brain.

Symptoms of craniosynostosis

Talk to your pediatrician if your baby has any of these craniosynostosis symptoms:

  • An abnormally shaped head
  • Slow or no growth in the head as your baby grows
  • No soft spot, or fontanelle on the top of the head
  • Developmental delays

Having these symptoms does not necessarily mean your child has craniosynostosis. Other conditions have similar symptoms. Your child’s pediatrician at Rush can help you determine the root of the problem and the best course of action for your baby.

Craniosynostosis: what you should know

  • While there is no known cause of craniosynostosis, it can be linked to genetic disorders that cause premature bone fusing, such as Apert and Pfeiffer syndromes.
  • If left untreated, craniosynostosis can lead to the following:
    • Cognitive and developmental delays
    • Pressure in the brain
    • Seizures
  • Most children who receive prompt medical treatment for craniosynostosis do not suffer additional medical problems.

Care for craniosynostosis at Rush

The most common and effective treatment for craniosynostosis is surgery. Surgery improves the appearance of the head, relieves pressure on the brain and creates space for proper brain growth and development. Babies have the best chance for recovery if they have surgery before they are 1 year old.

Surgery

During surgery, a craniofacial plastic surgeon and/or a pediatric neurosurgeon will separate the fused bones to make space for your baby’s head and brain to grow and develop normally.

After surgery

  • Helmet therapy: Some babies need to wear an orthotic helmet for several months after surgery to help reshape their heads.
  • Complementary therapies: Speech, occupational and physical therapy can help your child overcome developmental delays and abnormalities that may accompany craniosynostosis.