Coping with Craniosynostosis: Support and Resources for Moms


Dear Moms,

Having a child diagnosed with craniosynostosis can be overwhelming and stressful. As a mom, it’s natural to experience a range of emotions, from fear and confusion to sadness and anxiety. It’s important to remember that you are not alone in this journey. There are resources and support available to help you navigate through this challenging time.

Support Groups

One of the best ways to cope with the diagnosis of craniosynostosis is to connect with other moms who have gone through or are currently going through a similar experience. There are support groups both online and in person that provide a safe space for sharing feelings, asking questions, and receiving encouragement from others who understand what you’re going through. Search for local support groups in your area or join online communities dedicated to craniosynostosis.

Educational Resources

Understanding craniosynostosis and the treatment options available is crucial for making informed decisions for your child. Take the time to educate yourself about the condition, the surgical procedures, and the potential long-term effects. There are reputable websites, books, and medical professionals who can provide you with accurate and up-to-date information. Knowledge is empowering, and it can help alleviate some of the anxiety surrounding the unknown.

Therapy and Counseling

Seeking professional therapy or counseling can be beneficial for moms dealing with the stress of having a child with craniosynostosis. Therapy provides a supportive environment to process your emotions, learn coping strategies, and develop resilience in the face of adversity. A trained therapist can offer guidance and support tailored to your specific needs, helping you to navigate the challenges of parenting a child with a medical condition.


Amidst the demands of caregiving, it’s essential for moms to prioritize self-care. Taking care of your physical, emotional, and mental well-being is not selfish; it’s necessary for your own health and the ability to care for your child. Set aside time for relaxation, exercise, hobbies, or simply doing something that brings you joy. Remember that you deserve care and attention too.

Medical Experts

Building a strong relationship with medical experts, including pediatric surgeons, neurosurgeons, and other healthcare professionals, is crucial for managing your child’s craniosynostosis. Establish open communication with the medical team, ask questions, and seek second opinions if needed. It’s important to feel confident in the care your child is receiving and to have a support system of knowledgeable professionals.


Remember, it’s okay to feel overwhelmed, scared, and unsure about what lies ahead. You’re doing the best you can for your child, and seeking support and resources is a proactive step in coping with craniosynostosis. As moms, we have a remarkable ability to be resilient, compassionate, and strong. Reach out for help when you need it, and know that there are others who are ready to walk alongside you in this journey.


Q: How can I find a support group for moms of children with craniosynostosis?

A: You can start by asking your child’s healthcare provider for recommendations or searching online for local and national support groups. Websites such as and the Craniosynostosis and Positional Plagiocephaly Support (CAPPS) organization offer resources for connecting with other parents.

Q: What can I do to support my child through craniosynostosis surgery?

A: Before the surgery, be open and honest with your child about what to expect. Comfort and reassure them, and let them express their feelings. After the surgery, provide a calm and nurturing environment for recovery, and follow the post-operative care instructions from the medical team.

Q: How can I manage my own anxiety and stress as a mom?

A: Practice self-care activities such as meditation, exercise, journaling, or talking to a therapist. It’s important to prioritize your own mental and emotional well-being in order to better support your child.