Craniosynostosis 101: What Parents Need to Know


Craniosynostosis 101: What Parents Need to Know

Dear parents,

As your child continues to grow, you may come across terms and conditions that you are unfamiliar with. One such condition is craniosynostosis. Understanding what it is, how it is diagnosed, and how it can be treated is crucial for taking care of your child’s health. Let’s dive into the basics of craniosynostosis to help you navigate through this challenging but manageable condition.

What is Craniosynostosis?

Craniosynostosis is a condition where one or more of the fibrous sutures in an infant’s skull prematurely fuse together. Normally, these sutures allow the skull to expand as the brain grows during childhood. When they prematurely fuse, the skull cannot expand properly, leading to an abnormal head shape and potential problems with brain development.

Diagnosing Craniosynostosis

If you notice that your baby’s head shape looks unusual or is not developing normally, it is essential to consult with a pediatrician. A physical exam and imaging tests, such as a CT scan or MRI, may be used to confirm the diagnosis of craniosynostosis.

Treatment Options

The treatment for craniosynostosis typically involves surgery to separate the fused sutures and allow the skull to grow properly. This surgery is usually performed by a pediatric neurosurgeon or a plastic surgeon who specializes in craniofacial surgery. The earlier the condition is diagnosed and treated, the better the outcome is likely to be.

Recovery and Follow-Up

After surgery, your child may need to wear a helmet to help shape their head as it continues to grow. Regular follow-up appointments with the surgical team will be necessary to monitor your child’s progress and ensure that their head shape is improving as expected.


Q: Can craniosynostosis be prevented?

A: Craniosynostosis is not preventable as it is typically a result of genetic factors or unknown causes. However, early diagnosis and treatment can help prevent complications and promote normal head growth.

Q: Will my child have long-term effects from craniosynostosis?

A: With timely treatment, most children with craniosynostosis go on to lead normal, healthy lives. However, some may experience minor issues with head shape or development that may require ongoing monitoring.

Q: How common is craniosynostosis?

A: Craniosynostosis affects approximately 1 in every 2,500 live births. It is more common in boys than girls and may occur as part of a genetic syndrome in some cases.

Remember, you are not alone in this journey. Reach out to your healthcare provider if you have any concerns about your child’s head shape or development. With proper care and treatment, craniosynostosis can be managed effectively, and your child can thrive.

Wishing you and your little one all the best,

Your parenting support team