What is craniosynostosis?

Craniosynostosis happens 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.

Types of craniosynostosis

There are 2 types of craniosynostosis:

• single suture craniosynostosis — is the most common type and it affects one of the sutures
• syndromic craniosynostosis — is rare, affects more than one suture and other parts of the skull and body can also be affected

A single suture craniosynostosis happens in about 1 in every 3000 births.

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

What are the symptoms of craniosynostosis?

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

The symptoms of syndromic craniosynostosis may also include:

• breathing, hearing or speaking problems
• eating difficulties
• hand and foot differences, like fingers or toes that are fused (stuck together)

What causes craniosynostosis?

The cause of craniosynostosis in most babies is not known.

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

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

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 the shape of your baby's head, see your doctor.

Your doctor will ask questions about:

• 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 genetic testing using a sample of their blood.

It's best to detect (find) craniosynostosis early so that treatment can start as soon as possible. If your baby has this condition, your doctor will refer them to a specialist paediatric team.

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.

Researchers are currently studying how stem cells might prevent the bones of the skull from fusing too early.

Can craniosynostosis be prevented?

There is no known way of preventing craniosynostosis.

Surgery can help change the shape of the skull and stop craniosynostosis from getting worse as your baby grows.

What are the complications of craniosynostosis?

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

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

Resources and support

Support and information are available through Craniofacial Australia.

The Jigsaw Foundation has more information about craniosynostosis.

Genetic Alliance Australia helps families with craniosynostosis connect with each other and provides information about support groups. Call 02 9295 8359 for more information.

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 you 24 hours a day, 7 days a week.