What is craniosynostosis

Craniosynostosis occurs when one or more of the seams (called sutures) between the bones in a baby's skull close too early.

Your skull is made up of flat, plate-like bones that protect your brain.

In babies, the gaps between each bone are called sutures. There are 4 sutures in a baby's skull.

Usually, these sutures stay open while your baby's brain grows and develops. The sutures eventually fuse together when babies are about 2 years old.

In children with craniosynostosis, one or more of the sutures closes and the bones fuse too early. This causes your baby's head to be out of shape.

What are the symptoms of craniosynostosis?

The signs that your baby might have craniosynostosis include:

• an unevenly shaped head at birth or soon after
• abnormal growth and shape of your baby's head
• an abnormal or missing fontanelle (the soft triangle on the top of a baby's head)
• raised ridges along the sutures of your baby's head

What causes craniosynostosis?

The cause of craniosynostosis in most babies is not known.

In some cases, it occurs because of a genetic syndrome, such as Apert syndrome. But most babies with craniosynostosis do not have a genetic syndrome.

Research is ongoing into the causes of craniosynostosis that are not related to a genetic syndrome.

When should I see my doctor?

See your doctor if you have any concerns about the shape or growth of your baby’s head.

How is craniosynostosis diagnosed?

Craniosynostosis is normally diagnosed in the first few weeks of a baby's life. If you are concerned about your baby’s head, see your doctor.

Your doctor will ask:

• when you first noticed that your baby’s head shape was different
• whether their head shape has changed over time
• whether there were any problems during pregnancy
• whether you have noticed any other problems, including developmental delays

Your doctor will examine your baby's head thoroughly and measure it. They will check for any conditions that could affect your baby's health.

Your baby may have x-rays or CT scans to help confirm the diagnosis. They may have blood or other samples taken for genetic testing.

It's important to detect craniosynostosis early to start treatment early. If your baby has this condition, your doctor will refer them to a specialist paediatric team for assessment and treatment.

How is craniosynostosis treated?

Surgery is the main treatment. The aim is to return the skull to a more typical shape. Surgery also enables your baby’s brain to grow and develop normally.

Surgery for craniosynostosis is usually done between the ages of 3 months and 12 months. In rare cases, a child will need further surgery when they're a little older.

Your child will need to see their doctors regularly after surgery, to monitor their head growth and development.

Can craniosynostosis be prevented?

There is no known way of preventing craniosynostosis.

Complications of craniosynostosis

In some cases of craniosynostosis, there can be problems with:

• raised pressure within the skull (called raised intracranial pressure)
• eyesight
• growth and development

Resources and support

Support and information are available through Craniofacial Australia.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.