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What Is Craniosynostosis?

Craniosynostosis is a birth deformity that occurs when your baby’s skull bones join (fuse) too early, usually before they are born. Craniosynostosis will change the shape of your baby’s head and might limit the amount of room for brain growth. Most cases of craniosynostosis will require surgery. 

Why Choose U of U Health

University of Utah Health’s pediatric plastic surgeons and pediatric neurosurgeons are highly trained and experienced in performing all types of craniosynostosis surgeries. We perform these surgeries at Primary Children’s Hospital, where we have a pediatric intensive care unit and specially trained anesthesiologists to provide compassionate, quality care for babies and children during their surgeries.

Craniosynostosis Types

There are four main types of craniosynostosis. Each refers to a different fusion (joining) location in the baby’s head and results in a distinct head shape. 

  • Sagittal craniosynostosis—This fusion is down the middle of the head, which results in a long, narrow shape to the baby’s head. 
  • Metopic craniosynostosis—This fusion is down the middle of the forehead. This forms a triangular shape of the baby’s forehead when viewed from above. 
  • Coronal craniosynostosis—This fusion is toward the front of the head on one side. One eye socket will appear larger than the other. 
  • Lambdoid craniosynostosis—This fusion occurs at the back of the head. The baby’s head will be flattened on the back and one ear will be lower and farther back than the other. 
  • Multi-suture synostosis—More than one of above

Craniosynostosis Causes

There are no known causes of craniosynostosis. In many cases, an improper gene copying process occurs. This is a natural gene mutation and does not mean that it is a genetic condition. It’s very rare for craniosynostosis to run in families.

Long-Term Effects of Craniosynostosis

If craniosynostosis is caught and treated early, babies will not suffer any long-term effects. There’s a small chance (about one to two percent) that craniosynostosis patients might need additional surgery laterOur craniosynostosis team will check on your child until they are five years old. This extended monitoring allows us to catch any future issues that may arise.

Craniosynostosis Diagnosis

The shape of your baby’s head is the primary factor used in diagnosing craniosynostosis. Few other conditions cause these unique head shapes. Your baby’s doctor usually diagnoses craniosynostosis based on looking at their head shape. This is done within hours of birth, after the normal swelling from delivery goes down, or during one of their checkups in the first few weeks of life. 

If you notice that your baby has an unusual head shape and think craniosynostosis might be the cause, you can contact our neurosurgery department and email pictures of your baby’s head. From those images, our specialists will determine if an in-person evaluation is needed to diagnose your baby with craniosynostosis. 

computerized tomography (CT) scan is frequently performed as well. This helps your child’s doctor to determine where the fusion is and plan a safe surgery. 

At What Age Is Craniosynostosis Diagnosed?

Nurses and pediatricians will typically notice an unusual head shape shortly after a baby is born. They will work with you to set up further evaluation and care. If you’re concerned about your baby’s head shape, contact your primary care doctor for an evaluation. They will refer your baby to our specialists if needed.

Craniosynostosis Treatment

Surgery is the only way to correct craniosynostosis. Our team will suggest one of several different surgical procedures, depending on your child’s age and type of craniosynostosis.

Find a Pediatric Surgeon

Make an Appointment for Craniosynostosis Surgery

If your baby needs craniosynostosis surgery, their pediatrician can refer them to our surgery department. You can also call us without a referral at 801-662-5346 to make an appointment.

Craniosynostosis surgery is covered by most health insurance policies. Our team will help with insurance authorization, but it’s always good to plan ahead and contact your carrier before your baby’s surgery to confirm that the surgery and helmets (if needed) are covered by your policy. 

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