Helping Your Child with Craniosynostosis: A Parent’s Handbook


Helping Your Child with Craniosynostosis: A Parent’s Handbook

Craniosynostosis is a condition where one or more of the fibrous joints between the bones of an infant’s skull close prematurely. This can cause problems with brain growth and head shape, but with early detection and proper treatment, children can live normal, healthy lives. As a parent, it can be overwhelming to receive this diagnosis, but there are many ways you can support your child through this journey.

Educate Yourself

One of the first steps in helping your child with craniosynostosis is to educate yourself about the condition. Talk to your child’s healthcare provider, do research online, and connect with other parents who have gone through similar experiences. Knowledge is power, and understanding craniosynostosis can help you feel more confident in making decisions for your child.

Seek Out Specialists

It’s important to work with a team of specialists who have experience treating craniosynostosis. This may include pediatric neurosurgeons, craniofacial surgeons, geneticists, and other healthcare providers. These experts can help you understand the treatment options available and provide the best care for your child.

Support Your Child

Living with craniosynostosis can be challenging for your child, both physically and emotionally. Be there to support them every step of the way. Offer comfort, reassurance, and encouragement, and remind them that they are loved no matter what. Encourage them to talk about their feelings and seek help if needed.

Monitor Progress

Regular follow-up appointments with your child’s healthcare team are important to monitor their progress and make any necessary adjustments to their treatment plan. Keep track of any changes in your child’s symptoms or development and communicate openly with their healthcare providers.


What are the treatment options for craniosynostosis?

The treatment for craniosynostosis depends on the severity of the condition and the age of the child. In some cases, surgery may be necessary to correct the shape of the skull and allow for proper brain growth. Other treatment options may include wearing a helmet or undergoing physical therapy.

Is craniosynostosis a hereditary condition?

Craniosynostosis can be caused by a variety of factors, including genetic mutations, environmental factors, and other unknown causes. While some cases may be hereditary, many are not. It’s important to work with a geneticist to understand the underlying cause of your child’s condition.

How can I best support my child through their craniosynostosis journey?

The best way to support your child is to be there for them emotionally, physically, and mentally. Offer love, understanding, and encouragement, and help them navigate the challenges they may face. Remember, you are not alone, and there are resources available to help you and your child through this journey.