Craniosynostosis

When a child’s skull development gets ahead of schedule, we can help. Our experts recognize the signs of craniosynostosis for a prompt and accurate diagnosis. They also know when to recommend more extensive intervention.

Our experienced pediatric neurosurgeons use careful planning and delicate techniques to protect your child’s brain health. They can successfully perform even the most complex repairs while helping your child look and feel their best.

What is craniosynostosis?

Your baby’s skull contains several bones that fit together, connected by soft, flexible seams. They also have a soft spot [PDF] at the top of their head where the bones don't come together. These seams and the soft spot allow the bones to shift during birth and initial growth. The seams should turn into bone and become sealed around the ages of two or three.

With craniosynostosis, one or more seams close before they should, often in the womb. Sometimes, the brain still develops normally after birth, even if the skull takes an unusual shape. At other times, two or more seams close early, cramping the brain so it presses against the skull. If untreated, the pressure can lead to developmental delays or cognition issues.

What causes craniosynostosis?

Occasionally, craniosynostosis is caused by a genetic condition inherited from a parent, one that doctors can confirm with genetic testing. Children with one of these conditions – including Apert, Pfeiffer or Crouzon syndromes – often experience additional physical changes and health challenges.

For other children, doctors don’t yet know what causes craniosynostosis, and research continues. Initial evidence suggests a combination of genetic changes in babies developing in the womb and environmental factors experienced by their mothers could be the cause.

Craniosynostosis symptoms

While craniosynostosis is occasionally not spotted right away, it typically gets noticed at birth or soon thereafter. Signs of the condition include:

• Head size remaining about the same even as the rest of your baby grows
• Hard ridge forming where the sections of the skull meet
• Bulge developing at the soft spot on top of your baby’s head
• Face and head taking shape in unusual proportions such as:
  • Long and narrow head (scaphocephaly)
  • Flattened forehead on one side (anterior plagiocephaly), possibly with raised eye socket and nose pulled over
  • Broad and short head (brachycephaly)
  • Head flat in the back (posterior plagiocephaly)
  • Triangular head when seen from above (trigonocephaly)

Craniosynostosis effects

If craniosynostosis causes the brain to pressure the skull, a baby without treatment can eventually experience:

• Blindness or other eye problems
• Cognitive challenges
• Development delays
• Lethargy
• Seizures

Craniosynostosis diagnosis

Medical providers sometimes notice possible signs of craniosynostosis during routine ultrasounds of babies in the womb. Otherwise, the condition usually gets spotted at birth or soon afterward.

Our team can get you in for prompt evaluation in case your baby needs care right away. We’re experienced with recognizing the signs and confirming a diagnosis with the right tests. Specialists from our neurosurgery program typically offer:

• Physical exam: We look for unusual features in the skull and face.
• Imaging: We use computed tomography (CT) or MRI scans to get detailed pictures of the skull and brain. These imaging tests help us see if bones have fused together.
• Genetic testing: If we think your child may have an underlying, inherited condition, we can refer you to a genetic counselor. The counselor can help you decide if genetic testing is right for your family. Learn more about our genetics program.

Craniosynostosis treatment

Your child may need surgery to reduce pressure in their head, give their brain space to grow and help them look like their peers. Our neurosurgeons have the experience to know when this step is needed, and the expertise to accomplish it. They use 3D imaging to create a detailed plan well before bringing your child to the operating room.

Younger infants may only need minimally invasive surgery with smaller incisions to open a closed seam. For other children, neurosurgeons carefully reshape the skull with an open operation. They may partner with plastic surgeons at Advocate Children’s Hospital. Regardless of the approach, your child receives treatment tailored to their needs and full follow-up care.