What is craniosynostosis?
Craniosynostosis occurs when one or more of the seams (called sutures) between the bones in a newborn baby's skull close too early. It is rare — affecting about 1 in 3,000 babies — and can be treated successfully.
The skull is made up of flat, plate-like bones that protect the brain. The gaps between each bone are called sutures. There are 4 sutures in a baby's skull.
Usually, the sutures stay open while the baby's brain grows and the child develops. The sutures eventually fuse together when the baby is about 2 years old.
In children with craniosynostosis, the sutures close and the bones fuse too early, which doesn't leave the brain with enough room to grow. The developing brain presses against the skull, causing the baby's head to be pushed out of shape.
In some cases, the skull compresses the brain and can cause problems with eyesight, hearing and intellectual development.
What are the signs and 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 the 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 a baby's head
What causes craniosynostosis?
The cause of craniosynostosis in most babies is not known. In some cases, craniosynostosis occurs because of an abnormality in a single gene, which can cause a genetic syndrome. These syndromes include Apert syndrome, Carpenter syndrome, Crouzon syndrome, Pfeiffer syndrome and Saethre-Chotzen syndrome.
Most babies with craniosynostosis do not have a genetic syndrome. Research is ongoing into the causes of craniosynostosis that is not related to a genetic syndrome. Studies have shown the risk of having a baby with craniosynostosis is higher in women who:
- have thyroid disease or who are treated for thyroid disease while pregnant
- report using clomiphene citrate (a fertility medication) just before or early in pregnancy
How is craniosynostosis diagnosed?
Although craniosynostosis can be identified during a routine ultrasound before a baby is born, it is normally diagnosed in the first few weeks of a baby's life.
A doctor will examine your baby's head thoroughly and measure it, and will check for any other conditions that could affect the 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 the condition early to start treatment as soon as possible, so the brain can grow normally.
How is craniosynostosis treated?
Surgery opens up the bones and allows the skull to grow into a more typical shape. This enables the brain to grow and develop.
Surgery for craniosynostosis is usually performed when a child is between 3 months and 12 months old. In rare cases, a child will need further surgery when they're a little older.
Your child will need to see the doctors regularly after surgery, to monitor both their skull and their development.
Where can I go for support?
You will most likely need help and support while your child is going through craniosynostosis. The hospital should be able to help.
You can also get support from Beyond Blue website or on 1300 22 4636
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Last reviewed: May 2021