Coping with Craniosynostosis: Tips and Advice for Parents

Welcome, parents! If you’re reading this, you may have just received the news that your child has craniosynostosis. It’s normal to feel overwhelmed and unsure of what to do next, but know that you’re not alone. Here are some tips and advice to help you navigate this challenging time.

Educate Yourself

One of the most important things you can do as a parent of a child with craniosynostosis is to educate yourself about the condition. Research the different types of craniosynostosis, treatment options, and potential outcomes. The more you know, the better equipped you will be to make informed decisions about your child’s care.

Seek Support

It’s important to have a strong support system in place during this time. Reach out to family, friends, and support groups for parents of children with craniosynostosis. Talking to others who have been through a similar experience can provide comfort and valuable insight.

Communicate with Your Healthcare Team

Make sure to maintain open and honest communication with your child’s healthcare team. Ask questions, voice your concerns, and be an active participant in your child’s care. Your healthcare providers are there to support you and your child every step of the way.

Take Care of Yourself

Remember to prioritize self-care during this challenging time. Make sure to eat well, exercise, get enough rest, and seek professional help if you’re feeling overwhelmed. You’ll be better able to care for your child if you’re taking care of yourself, too.

Give Yourself Grace

Parenting a child with craniosynostosis can be emotionally and physically draining. It’s okay to not have all the answers and to make mistakes along the way. Give yourself grace and remember that you’re doing the best you can for your child.

Stay Positive

While it’s natural to feel worried and anxious about your child’s future, try to focus on the present and stay positive. Celebrate your child’s milestones and accomplishments, no matter how small. Your love and support are vital in helping your child thrive.


Here are some resources that may be helpful for parents of children with craniosynostosis:

  • National Organization for Rare Disorders (NORD)

  • American Cleft Palate-Craniofacial Association (ACPA)

  • Cranio Care Bears

Final Thoughts

Craniosynostosis is a challenging condition, but with the right support and resources, you can navigate this journey with strength and resilience. Remember that you are not alone, and there are resources available to help you and your child every step of the way.


What is craniosynostosis?

Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant’s skull prematurely fuses, leading to abnormal skull growth and shape.

How is craniosynostosis treated?

Treatment for craniosynostosis often involves surgery to correct the abnormal skull growth and shape. The type of surgery needed will depend on the specific type of craniosynostosis and the severity of the condition.

What are the potential long-term effects of craniosynostosis?

The potential long-term effects of craniosynostosis can vary depending on the severity of the condition. In some cases, children may experience developmental delays, vision problems, or hearing loss. However, with early detection and intervention, many children with craniosynostosis go on to lead healthy, happy lives.