Craniosynostosis Diagnosis: What to Expect and How to Prepare

If your child has been diagnosed with craniosynostosis, it can be a stressful and overwhelming time for parents. Understanding what to expect during the diagnosis process can help ease some of the anxiety and prepare you for what lies ahead.

What to Expect During the Diagnosis Process

When a doctor suspects craniosynostosis, they will typically start with a physical examination of the baby’s head. This may involve feeling for abnormalities in the shape of the skull and checking for any signs of increased intracranial pressure.

The next step may involve a series of imaging tests, such as a CT scan or MRI, to get a clearer picture of the skull and the fused sutures. These tests can help confirm the diagnosis and determine the extent of the craniosynostosis.

Preparing for the Diagnosis

As a parent, it’s important to be prepared for the emotional and logistical aspects of a craniosynostosis diagnosis. Here are some tips to help you navigate this process:

  • Stay informed: Educate yourself about craniosynostosis, its causes, and treatment options. This can help you make informed decisions and advocate for your child.

  • Reach out for support: Don’t hesitate to lean on family, friends, and support groups for emotional support and guidance. You are not alone in this journey.

  • Prepare questions: Write down any questions or concerns you have before meeting with the healthcare provider. It can be easy to forget things in the moment, so having them written down can be helpful.

  • Stay positive: Remember that early diagnosis and treatment can lead to positive outcomes for children with craniosynostosis. Stay hopeful and focus on the road ahead.


Receiving a diagnosis of craniosynostosis can be a challenging experience for any parent. By understanding the diagnosis process, staying informed, reaching out for support, and staying positive, you can navigate this journey with strength and resilience. Remember, you are not alone, and there is a supportive community ready to help you every step of the way.


What causes craniosynostosis?

Craniosynostosis is often caused by a combination of genetic and environmental factors. It can also occur sporadically without a clear cause.

Is surgery always necessary for craniosynostosis?

Not all cases of craniosynostosis require surgery. The treatment plan will depend on the severity of the condition and the potential impact on the child’s development.

What are the long-term effects of craniosynostosis?

With early diagnosis and appropriate treatment, children with craniosynostosis can go on to lead healthy and fulfilling lives. Regular monitoring and follow-up care are essential to ensure optimal outcomes.