Craniosynostosis Awareness: Supporting Your Child Through Diagnosis and Treatment


Craniosynostosis is a condition in which the bones in an infant’s skull fuse together too early, leading to problems with normal brain and skull growth. It can be a difficult diagnosis to receive, but with the right support and treatment, children with craniosynostosis can go on to lead happy, healthy lives. As a parent, it’s important to educate yourself about this condition and to know how to support your child through diagnosis and treatment.

Understanding the Diagnosis

Receiving a diagnosis of craniosynostosis can be overwhelming, but it’s important to remember that you are not alone. Connect with other parents who have gone through a similar experience, and lean on your healthcare team for support and guidance. Understanding the specifics of your child’s diagnosis, including which sutures are affected and how it will impact their growth, can help you feel more in control and prepared to make informed decisions about treatment.

Exploring Treatment Options

There are several different treatment options for craniosynostosis, and the best approach will depend on the severity of the condition and the age of your child. Surgery is often necessary to release the fused skull bones and allow for normal brain growth. It’s natural to feel anxious about your child undergoing surgery, but rest assured that pediatric craniofacial surgeons are highly skilled in these procedures and will prioritize your child’s safety and well-being.

Supporting Your Child Through Treatment

Before, during, and after treatment, your child will need extra love, care, and attention. Be prepared for a recovery period after surgery, during which your child may experience discomfort and require extra support. Keep an open line of communication with your healthcare team, and don’t hesitate to ask for help when you need it. It’s normal to feel overwhelmed at times, but by focusing on supporting your child through this journey, you can help them feel safe and secure as they recover.


Receiving a diagnosis of craniosynostosis can be daunting, but with the right information and support, you can navigate this challenging time with grace and strength. Educate yourself about the condition, explore treatment options, and focus on supporting your child through their diagnosis and treatment. With your love and guidance, your child can overcome craniosynostosis and thrive.


Q: Is craniosynostosis a common condition?

A: Craniosynostosis occurs in about 1 in every 2,000 births, making it a relatively rare condition. However, with early diagnosis and appropriate treatment, the outlook for children with craniosynostosis is generally favorable.

Q: Will my child need multiple surgeries for craniosynostosis?

A: In some cases, additional surgeries may be necessary to address ongoing issues with skull or facial growth. Your healthcare team will monitor your child’s progress and recommend additional interventions if needed.

Q: How can I find support as a parent of a child with craniosynostosis?

A: Connecting with other parents, either in person or through online support groups, can provide valuable emotional support and practical advice. Reach out to your healthcare team for recommendations on local support resources.