Craniosynostosis

Your child’s treatment team is managed by a “hub” consisting of a craniofacial pediatrician, craniofacial nurse specialist, family service coordinator and social worker.

Your child’s team also will include a craniofacial plastic surgeon, and a pediatric neurosurgeon. If needed, your child may receive care from other experts in our center, including a surgical orthodontist, orthotist, dietitian, ophthalmologist and otolaryngologist.

We care for care for your child’s physical, emotional and comfort needs. Read more about the supportive care we offer.

A diagnosis of craniosynostosis can be scary. We take time to explain your child’s condition and answer all your questions.

We help you fully understand your treatment options, so you can make the choices that are right for your family. Our social workers support your child and family through the challenges of this condition.

Seattle Children’s provides craniofacial care for children living in Washington, Alaska, Montana and Idaho. We also care for patients from across the globe. This experience has helped us develop systems to provide outstanding, personal care at a great distance.

We help our patients transition to care from providers for adults when the time is right. See Transition to Adult Care - Craniosynostosis in Your Family (PDF).

Our team has created a clinical care pathway that guides your child’s treatment from diagnosis onward. It is based on the research evidence about what is most effective. This gives doctors a blueprint for giving the best care and makes it easier to improve that care.

As a founding member of the Synostosis Registry Group (SynRG), we conduct multicenter research on craniosynostosis. Dr. Amy Lee and Dr. Craig Birgfeld lead this work at Seattle Children’s.

We are building a library of 3D CT (computed tomography) images to study the best surgical approach for different types of craniosynostosis. The images show changes in facial and skull shape before and after surgery.

Our research is helping us to:

• Better understand the genetic causes of craniosynostosis
• Study how the condition affects learning and behavior
• Build a library of 3D images to find out which surgical approaches lead to the most improvement for a specific syndrome

Read more about:

• Craniosynostosis research at Seattle Children's

In this video, our expert doctors share how craniosynostosis is diagnosed. They also explain our team approach to the best care for your child.

Our Craniofacial Genetics Clinic does testing to find if your child has a craniosynostosis syndrome, such as:

• Crouzon syndrome
• Apert syndrome
• Saethre-Chotzen syndrome
• Muenke syndrome
• Pfeiffer syndrome 

Knowing if your baby’s craniosynostosis is part of a syndrome helps us give your child the best care.

Our team includes geneticists and genetic counselors. They can advise you about the possible benefits of genetic testing and explain the results of genetic tests. Understanding your child’s condition can help you make informed decisions about their treatment.

For babies with a fusion of the sagittal or lambdoid structure, the options depend on their age.

For babies younger than 4 months we offer:

• Endoscopic strip craniectomy, followed by helmet therapy to mold the skull
• Open cranial vault reconstruction 

See how the open cranial vault reconstruction and endoscopic procedures compare.

For babies older than 4 months, we recommend open cranial vault reconstruction. Open surgery is best for older babies because skull growth slows at 5 months of age, and helmet therapy to reshape the skull is less effective. 

We often recommend open fronto-orbital advancement for babies with a fused metopic or coronal suture. This surgery takes place when your baby is 9 to 12 months, depending on which suture is fused.

For babies 4 months or younger with a single fused metopic or coronal suture, endoscopic strip craniectomy may also be an option. But there is a greater chance that they will need open surgery later. We partner with you to make a decision that is best for your family.

Babies with multiple fused sutures or those with genetic syndromes usually need a series of operations to repair the fused suture and treat other health conditions. Learn about surgery for children with craniofacial syndromes.

• During this operation, surgeons use a thin, lighted tube with a camera and small tools attached (endoscope).  
• The craniofacial plastic surgeon makes 2 small cuts (incisions) in the top of your baby's head. Each cut is about 1 inch (3 cm).  
• Working together, the plastic surgeon and neurosurgeon remove bone but do not reshape your baby’s skull.  
• After the surgery, your baby wears a helmet for several months. The helmet molds their head to a shape that allows for normal brain growth. 

See details on endoscopic strip craniectomy and helmet therapy.

We use open cranial vault reconstruction to repair a fused sagittal structure when the baby is 3 to 6 months old. We do surgery on the lambdoid structure when a baby is 9 to 12 months old.

• Open cranial vault reconstruction starts by making a zig-zag cut (incision) over the top of baby’s head. The incision goes from one side of the temple to the other.
• The plastic surgeon separates the skin and other soft tissue from the bone underneath.
• Next, the plastic surgeon marks a pattern of bone cuts that will allow the skull shape to change as the brain grows.
• The neurosurgeon makes small holes in the skull. The surgeons carefully separate the coating of the brain (dura) from the bone.
• The plastic surgeon reshapes the bone.
• Sometimes surgeons use plates and screws to hold the shape during healing. These dissolve completely in 1 to 2 years. Rarely, small surgical wires are used for added strength. These do not dissolve.
• Most babies spend 3 to 5 nights in the hospital, including 1 night in the intensive care unit (ICU).

After surgery, your baby's brain has more room to grow and their skull has a more typical shape. Your child does not need a helmet to shape their head after surgery.

Finnley before (top) and after (bottom) open cranial vault reconstruction at Seattle Children's to give his brain more room to grow.

This video compares open cranial vault reconstruction and endoscopic strip craniectomy.

Both options are available for babies up to 4 months old who have a single fused sagittal or lambdoid suture.

We recommend fronto-orbital advancement surgery for babies with metopic and unilateral coronal synostosis. We do this surgery when your baby is 9 to 12 months old, depending on which suture is fused.

• A plastic surgeon and a neurosurgeon work together to move and reshape your baby’s forehead and the upper part of their eye sockets.
• The operation creates more space for your baby’s brain and more protection for their eyes.
• To hold the bone in its new shape until it heals, the surgeon may use screws and plates that absorb into the body over time.
• The operation takes 4 to 5 hours.
• Most babies stay in the hospital 3 to 4 days, including 1 day in the ICU.

Read more about fronto-orbital advancement.

 This video explains how fronto-orbital advancement surgery can repair a metopic suture or a coronal suture on 1 side of a baby’s head (unilateral coronal). 

This video explains what to expect on your child's craniofacial surgery day and how we make the process easier for our patients and their families.