The Facts About Craniosynostosis: A Parent’s Guide

Head shape

If your child has been diagnosed with craniosynostosis, it can be a worrying and overwhelming time for you as a parent. Understanding what this condition is, how it can be treated, and what to expect can help you feel more informed and empowered. Here’s a comprehensive guide to help you navigate through this challenging journey.

What is Craniosynostosis?

Craniosynostosis is a condition in which one or more of the fibrous joints between the bones of an infant’s skull (known as sutures) close prematurely, before the brain is fully formed. This can cause problems with normal brain and skull growth.

Types of Craniosynostosis

There are several types of craniosynostosis, including sagittal synostosis (most common), metopic synostosis, coronal synostosis, and lambdoid synostosis. Each type can cause distinct changes in the shape of the skull and may require different treatment approaches.

Diagnosis and Treatment

Diagnosing craniosynostosis often involves a combination of physical examination, imaging tests (such as CT scans), and in some cases genetic testing. Treatment typically involves surgery to reshape the skull and allow for normal brain growth. The timing and type of surgery will depend on the severity and type of craniosynostosis.

What to Expect After Surgery

Recovery from craniosynostosis surgery can vary, but most children are able to go home within a few days. There will be follow-up appointments to monitor your child’s progress and ensure that the skull is growing properly. In some cases, additional surgeries or therapies may be needed to address any lingering issues.

Emotional Support for Parents

Dealing with a child’s medical condition can take a toll on parents emotionally. It’s important to seek support from friends, family, or a professional counselor. Connecting with other parents who have gone through similar experiences can also provide valuable insight and comfort.


Q: Will my child have any lasting effects from craniosynostosis?

A: In most cases, children who receive timely and appropriate treatment for craniosynostosis go on to lead normal, healthy lives. However, regular monitoring and follow-up care are important to address any potential issues that may arise.

Q: Can craniosynostosis be prevented?

A: Craniosynostosis is not usually preventable, as it is often due to genetic factors or occurs spontaneously. However, early detection and intervention can help minimize the impacts of the condition.

Q: What can I do to prepare for my child’s surgery?

A: Before the surgery, talk to your child’s medical team about what to expect, any pre-operative preparations, and how to best support your child through the process. It’s also helpful to connect with other parents who have gone through similar experiences.