Craniosynostosis: A Guide for Parents of Infants

Head shape

Dear parents,

If you have come across the term “craniosynostosis,” it’s natural to have questions and concerns. This condition occurs when the bones in an infant’s skull fuse together too early, affecting the growth and shape of the head. As a parent, it can be overwhelming to receive this diagnosis, but with the right information and support, you can navigate through this challenging time. This guide aims to provide you with a better understanding of craniosynostosis and the options available for treatment.

Understanding Craniosynostosis

It’s important to know that craniosynostosis is not a result of anything the parents did or did not do during pregnancy. It is a congenital condition that can occur in about 1 in every 2,000 live births. The early fusion of the skull bones can lead to problems with brain growth and development, as well as changes in the appearance of the head and face.

There are different types of craniosynostosis, each affecting specific skull bones. Some common types include sagittal craniosynostosis, which affects the suture at the top of the head, and metopic craniosynostosis, which affects the suture near the forehead. The diagnosis of craniosynostosis is usually done through physical examination, medical history review, and imaging tests such as CT scans or MRIs.

Treatment Options

When it comes to treating craniosynostosis, early intervention is key. The goal of treatment is to allow the brain to grow properly and to improve the appearance of the head and face. Surgery is often necessary to release the fused skull bones and reshape the skull. The timing and type of surgery depend on the specific type of craniosynostosis and the age of the infant.

As a parent, it’s natural to feel anxious about the idea of your child undergoing surgery, but rest assured that pediatric craniofacial surgeons are highly skilled in performing these procedures. They will work closely with you to explain the surgical process, address your concerns, and provide comprehensive care for your child.

Caring for Your Child

While the prospect of surgery can be daunting, it’s important to remember that with the right medical care and support, children with craniosynostosis can lead healthy and fulfilling lives. After surgery, your child may need some time to recover, and you will play a crucial role in ensuring their comfort and well-being. Be sure to follow the post-operative care instructions provided by the medical team and keep all follow-up appointments.

It’s also important to foster a positive and supportive environment for your child. Emphasize their strengths and unique qualities, and be open to discussing any concerns they may have as they grow older. Connecting with other parents of children with craniosynostosis can also provide valuable support and resources.


Dear parents, as you navigate the journey of raising a child with craniosynostosis, know that you are not alone. With the right medical care, emotional support, and advocacy for your child, you can help them thrive and reach their full potential. Stay informed, stay connected, and remember that love and understanding are powerful tools in facing any challenge.


Q: Will my child need additional surgeries as they grow?

A: In some cases, additional surgeries may be needed to address ongoing issues with skull growth and development. Your medical team will monitor your child’s progress and discuss any further treatment options as needed.

Q: Will craniosynostosis affect my child’s cognitive development?

A: While craniosynostosis can potentially impact cognitive development, early intervention and appropriate medical care can help minimize any potential effects on your child’s cognitive abilities.

Q: How can I find support for myself and my child?

A: Connecting with support groups, such as the Craniosynostosis Support Network, can provide you with valuable resources, advice, and a network of parents who understand what you are going through.