Raising a Child with Craniosynostosis: Tips and Encouragement for Moms

Head shape

Dear moms,

Raising a child with craniosynostosis can be challenging, but it’s also incredibly rewarding. As you navigate this journey, it’s important to remember that you’re not alone. Here are some tips and words of encouragement to support you along the way.

Educate Yourself

First and foremost, educate yourself about craniosynostosis. Understand the condition, its treatment options, and what to expect. Knowledge is power, and the more you know, the better equipped you’ll be to advocate for your child and make informed decisions.

Build a Support Network

Reach out to other moms who are also raising children with craniosynostosis. Connecting with those who have similar experiences can provide invaluable support and understanding. Join online support groups, attend local meetups, and don’t hesitate to lean on family and friends for help.

Take Care of Yourself

It’s easy to prioritize your child’s needs above your own, but it’s crucial to take care of yourself, too. Make time for self-care, whether it’s through exercise, meditation, or simply taking a break when you need it. You’ll be a better mom when you prioritize your own well-being.

Be Open and Honest

Be open and honest with your child about their condition in an age-appropriate manner. Encourage them to ask questions and express their feelings. Creating a safe space for open communication will help them feel supported and understood.

Celebrate Every Milestone

From surgeries to developmental milestones, celebrate every achievement your child reaches. It’s important to acknowledge their resilience and strength. Every step forward is a victory worth celebrating.


Q: What is craniosynostosis?

A: Craniosynostosis is a condition in which one or more of the fibrous joints between the bones of an infant’s skull close prematurely before the brain is fully formed.

Q: How is craniosynostosis treated?

A: Treatment typically involves surgery to reshape the skull and allow for proper brain growth. The specific approach will depend on the severity and location of the craniosynostosis.

Q: What challenges might my child face?

A: Depending on the severity of the condition, your child may face challenges with head shape, vision, and development. Early intervention and ongoing support can help address these challenges.

Remember, you are a strong and capable mom, and your child is lucky to have you. Embrace the journey, seek support when you need it, and celebrate the unique bond you share with your incredible child.