Craniosynostosis: A Parent’s Handbook for Understanding and Coping

Head shape

Welcome, parents! Today, we’re going to talk about a condition called craniosynostosis. If you’ve recently received this diagnosis for your child, it’s natural to feel overwhelmed and uncertain about what to expect. This handbook is designed to provide you with the information and support you need to understand and cope with craniosynostosis.

Understanding Craniosynostosis

Craniosynostosis is a condition in which one or more of the fibrous joints between the bones of a baby’s skull close prematurely before the brain is fully formed. This can cause problems with normal brain and skull growth, and may lead to head shape abnormalities and increased pressure on the brain.

There are different types of craniosynostosis, each affecting different sutures in the skull. The most common type is called sagittal craniosynostosis, which affects the suture at the top of the head and may result in a long, narrow head shape. Other types include metopic, coronal, and lambdoid craniosynostosis, each with its own distinct characteristics.

Coping with Craniosynostosis

Receiving a diagnosis of craniosynostosis can be distressing, but it’s important to remember that there are treatments available to help manage the condition. The primary treatment for craniosynostosis is surgery to release the affected suture and allow the skull and brain to grow normally. This surgery is typically performed within the first year of life to prevent long-term complications.

It’s natural to have concerns about your child undergoing surgery, but rest assured that craniosynostosis surgery is commonly performed and has a high success rate. Your child’s medical team will provide you with all the information you need to feel confident in the treatment plan.

Support for Parents

Managing a child’s medical condition can be emotionally and physically taxing for parents. It’s important to seek out support and resources to help you navigate this journey. There are many organizations and support groups dedicated to craniosynostosis that can provide valuable information, connect you with other parents facing similar challenges, and offer emotional support.

Remember to take care of yourself as well. Prioritize self-care and seek help from family and friends when you need it. You are not alone, and it’s okay to ask for help.


While a diagnosis of craniosynostosis can be overwhelming, it’s important to remember that there are resources and support available to help you and your child through this journey. By educating yourself about the condition, staying connected with your child’s medical team, and seeking out support from other parents, you can navigate craniosynostosis with confidence and resilience.


Q: Will my child’s head shape return to normal after surgery?

A: In most cases, a child’s head shape will improve significantly following craniosynostosis surgery. It’s important to follow your medical team’s post-operative care instructions to ensure the best possible outcome.

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

A: With early diagnosis and appropriate treatment, most children with craniosynostosis go on to lead healthy, normal lives without significant lasting effects. Regular follow-up with a craniofacial team is recommended to monitor your child’s development.