Conditions & Treatments
- A to Z Guide

Craniosynostosis

Disease Information

Treatment & Care

Children’s Hospital Boston has been a worldwide innovator in diagnosing and treating children with craniosynostosis for decades. Clinicians in our Departments of Neurosurgery and Plastic Surgery have extensive experience in treating children, adolescents and adults with all forms of the condition, and can even diagnose craniosynostosis in utero in many cases.

And we always use minimally invasive techniques—medical and surgical procedures that use small incisions and miniaturized cameras and tools—whenever we can.

A mom describes her son's struggle with a craniofacial anomaly and a brain tumor

Surgery

Most children with craniosynostosis will require surgical intervention.

Surgery for craniosynostosis:

is designed to reduce intracranial pressure and correct deformities in the facial and skull bones
often works best in children who are less than 1 year old, since the bones are still soft and pliable, making them easier to manipulate
may be recommended in much younger infants, including newborns, depending on the severity of their symptoms
can also be performed in older children (although the older the child, the more complex the surgery)
may need to be repeated over time, depending on the seriousness of the condition, as the child continues to grow

Before the operation, your child’s surgeon will:

explain the reasons to consider surgery
explain the different types of surgery and if your child is a candidate for the minimally invasive surgery
explain the steps involved in the operation
review aftercare instructions, including warning signs of possible complications

During surgery, the surgeon and treatment team will:

in the case of minimally invasive surgery, release the sutures that are abnormally fused
in the case of reconstructive surgery, reposition the skull bones to allow for normal growth and development

Monitoring and follow-up

After surgery, your child:

will stay in the hospital for one to five days
may have visible swelling for a few days to a few weeks
may need to wear a dressing covering her head, protecting the incision site from contamination and infection
will need to return for check-ups and evaluations to measure how well the skull, facial bones and brain are developing

Coping and support

When your child has craniosynostosis, your family may have many concerns and questions. Not only are you focused on meeting all of your child’s medical needs; you are also grappling with a significant emotional and psychological toll that can affect every member of the family.

In addition to the clinical information offered on this page, Children’s has several other resources designed to give your family comfort, support and guidance:

Patient and family resources at Children’s

Children’s Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:

being sick
facing uncomfortable procedures
handling pain
taking medication
preparing for surgery
changes in friendships and family relationships
managing school while dealing with an illness
grief and loss

The Experience Journal was designed byChildren’s psychiatrist-in-chief David DeMaso, MD and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with medical conditions and going through treatment.

Children’s Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:

short-term therapy for children admitted to one of our inpatient units
parent and sibling consultations
teaching healthy coping skills for the whole family
educating members of the medical treatment team about the relationship between physical illness and psychological distress

Children’s Department of Psychiatry publishes a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (.pdf file). Topics in the booklet include:

talking to your child about her condition
preparing for surgery and hospitalization
supporting siblings
taking care of yourself during your child’s illness
adjusting to life after treatment

Children’s Center for Families is dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All patients, families and health professionals are welcome to use the Center’s services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.

The Children’s chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child’s treatment.

Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.

Helpful links

Please note that neither Children’s Hospital Boston nor the Craniofacial Anomalies Program at Children's unreservedly endorse all of the information found at the sites listed below. These links are provided as a resource.