Craniosynostosis Awareness: How Parents Can Advocate for Their Child

When a child is diagnosed with craniosynostosis, it can be overwhelming for parents to navigate the medical system and ensure their child receives the best care possible. Craniosynostosis is a condition where one or more of the fibrous joints between the bones of a baby’s skull fuse prematurely, which can lead to head shape abnormalities and potential developmental issues.

Advocating for Your Child

As a parent, it’s important to be your child’s advocate and ensure they receive the necessary treatment and support for craniosynostosis. Here are some ways parents can advocate for their child:

1. Educate Yourself

Learn as much as you can about craniosynostosis, including the different types, treatment options, and potential outcomes. Knowledge is power, and understanding the condition will help you make informed decisions for your child.

2. Build a Support System

Reach out to other parents who have children with craniosynostosis, join online support groups, and connect with healthcare professionals who specialize in treating the condition. Having a strong support system can provide valuable information and emotional support during this challenging time.

3. Communicate Effectively

Be an active participant in your child’s healthcare team. Ask questions, share your concerns, and communicate openly with your child’s doctors and specialists. It’s important to voice your opinions and advocate for your child’s best interests.

4. Seek Second Opinions

If you have concerns about your child’s diagnosis or treatment plan, don’t hesitate to seek a second opinion from another healthcare provider. It’s crucial to explore all options and make sure you feel confident in the decisions being made for your child.


Advocating for a child with craniosynostosis can be a challenging and complex process, but by educating yourself, building a support system, communicating effectively, and seeking second opinions, you can ensure your child receives the best possible care. Remember that you are your child’s strongest advocate, and your voice matters in their journey towards healing and recovery.


Q: How is craniosynostosis diagnosed?

A: Craniosynostosis is typically diagnosed through a physical examination, imaging tests (such as CT scans or X-rays), and sometimes genetic testing. If you suspect your child may have craniosynostosis, it’s important to consult with a healthcare provider for an accurate diagnosis.

Q: What are the treatment options for craniosynostosis?

A: Treatment for craniosynostosis often involves surgery to correct the shape of the skull and allow for normal brain growth. The specific type of surgery will depend on the severity and location of the craniosynostosis, and your child’s healthcare team will work with you to determine the best course of action.