Craniosynostosis

What are the signs and symptoms of craniosynostosis?

In most cases, craniosynostosis does not cause any symptoms in babies. However, you or your pediatrician may notice physical signs of craniosynostosis as soon as your baby is born or a few months later.

Signs of craniosynostosis may include:

• Atypical head shape
• Asymmetric facial features
• Early closure of soft spot 
• Ridge on the skull where a suture is fused

As some kids with craniosynostosis get older, they may take longer to reach milestones in their intellectual and physical development. Sometimes, a child can have problems with eye movements, and, rarely, with vision itself.

However, a difference in head shape doesn’t always mean your child has craniosynostosis. Your child may have a condition called deformational plagiocephaly, which is related to their sleeping position. Your child may also simply have a variation in head shape that is not serious. Early closure of a baby’s soft spot or a ridge on the skull also doesn't always mean that your child has craniosynostosis. In some children, the soft spot just closes early and in others, the skull just has a ridge or two.

What tests are used to diagnose craniosynostosis? 

At Children's Colorado, your child's initial visit to the Craniofacial Program includes an evaluation of their medical history and a physical evaluation.

Our specialists may need additional tests to confirm the diagnosis and aid in treatment planning. Additional tests may include:

• Computed tomography (CT scan)allows doctors to see detailed views of the sutures of the skull.
• Magnetic resonance imaging (MRI)forms a clear view of the brain.
• Genetic testing allows specialists to check for related syndromes.
• 3D photography helps specialists take measurements of your child's head.

Why choose us to test your child for craniosynostosis?

At Children's Colorado, our tests and procedure are all designed for children. That means that our policy is to image gently. Our state-of-the-art diagnostic equipment uses the lowest level of radiation possible to get clear and accurate images. Not only is our equipment made for kids, but our pediatric specialists help kids relax and feel safe during testing.

How do specialists at the Craniofacial Program make a diagnosis?

Our specialists collect all the information from your child’s medical history, physical exam and any imaging we perform. Together, doctors and surgeons on our multidisciplinary team work together to give your family an accurate diagnosis and formulate the most effective treatment plan developed around your child’s unique condition.

Our specialists take into account:

• Your child's age, health and medical history
• Craniosynostosis type (which suture or sutures are involved)
• How atypical the head shape is
• Your input and preferences

How do we treat craniosynostosis?

Your child's craniosynostosis treatment depends on many factors including the type and severity of the condition. Some cases of craniosynostosis may be mild and only need to be monitored to see if the condition is affecting your child’s development and growth. Sometimes children may wear a helmet to gradually change the shape of their head. Others may require physical, speech or occupational therapy. In some cases, doctors may recommend surgery.

Craniosynostosis surgery

Surgery is common for craniosynostosis treatment. The goals of surgery are to produce a more typical head shape and provide room for the brain to grow and develop.

How to prepare for craniosynostosis surgery

Our team of doctors, nurses and surgeons will talk with you and your family about the entire process if they recommend surgery. Below are a few things to think about if you are considering surgery for your child.

Talk with our pediatric anesthesiologists

Anesthesia is a combination of medications used to create a sleep-like state. Since anesthesia affects children differently than adults, our anesthesiologists are trained and experienced in pediatric care to keep kids safe during and after surgery. Before craniosynostosis surgery, talk with a pediatric anesthesiologist so you understand how it will affect your child to learn what precautions we take to ensure your child is safe and comfortable during and after surgery.

Take a presurgery tour or watch a presurgery video

Preparing for surgery is important for your family's mental and emotional health. Children's Colorado offers families the opportunity to tour the hospital and ask questions about the day of surgery and recovery after surgery. Your family can also watch a presurgery video that explains everything you can expect to happen on the day of surgery. Both the tour and the video help ease anxiety and tell you what you can expect at Children's Colorado. 

Minimally invasive endoscopic craniosynostosis surgery

Your child's surgeon may recommend minimally invasive endoscopic surgery if your baby is between 2 months and 4 months of age and has only one closed suture. The specific recommended age for this procedure depends on the type of craniosynostosis a child has. Endoscopic surgery may not work as well in older babies or when more than one suture has closed early.

What happens during minimally invasive endoscopic craniosynostosis surgery?

Surgeons perform minimally invasive surgery through small incisions just big enough to fit surgical instruments. To see inside during surgery, surgeons use a small camera.

1. Before surgery, your child is put under general anesthesia, which puts them in a sleep-like state.
2. The surgeons create one or two small incisions (cuts) in the scalp. Then, a thin tube with an attached video camera and other instruments are inserted through the incision(s). The camera lets the surgeons see inside your child’s head while they perform surgery.
3. Once the camera and the instruments are inserted, the surgeons remove a narrow strip of bone along the closed suture, which opens the suture. Sometimes, extra cuts are made in the skull without removing any bone; this helps reshape the skull.
4. Finally, the surgeons remove the instruments and close the scalp incisions with dissolvable stiches.
5. Infants usually stay in the hospital for 1 to 3 days after surgery.
6. After surgery, your baby may need to wear a special helmet to help mold the shape of their head. This helmet may be worn from a few months up to a year or more.

Traditional open craniosynostosis surgery

Open surgery is the traditional surgical method for treating craniosynostosis. Surgeons may recommend open surgery if your baby is older than 4 months or has more than one closed suture.

The timing of open surgery depends on the type of craniosynostosis. Typically, surgeons usually recommend that babies with sagittal craniosynostosis have open surgery between 3 months and 12 months of age. Babies with coronal or metopic craniosynostosis usually have surgery between 4 months and 9 months of age. However, surgeons may perform open surgery even when your baby is older than 1 year.

What happens during open craniosynostosis surgery?

1. Before surgery, your child is put under general anesthesia, which puts them in a sleep-like state.
2. First, the surgeons create a wavy incision (cut) in the scalp. The position of the incision depends on what parts of the skull the surgeons need to work on.
3. Once the skull is exposed, the surgeons may remove a strip of bone along the closed suture, which opens the suture. When this is done, extra cuts may be made in the skull without removing any bone; this helps reshape the skull. Or, surgeons may not remove a strip of bone at all. They may instead make multiple cuts in the skull to reshape it.
4. Finally, the surgeons close the incision with dissolvable stitches.
5. After open surgery, infants usually stay in the hospital between 2 and 4 days.
6. Infants who undergo open surgery usually don't wear a helmet afterward to help reshape the skull. However, older babies who are starting to walk usually wear a protective helmet for several weeks until the remodeled skull bone is strong enough that the helmet isn’t needed.

Recovery from craniosynostosis surgery

After most children leave the hospital, they only need over-the-counter pain medicine for several days. Dissolvable stitches usually start to break down on their own within 2 to 4 weeks. The surgical scars will remain pronounced for some time but will continue to remodel over the next 1 to 2 years. Your child may take several days or weeks to return to normal sleeping behavior.

You and your baby will return to the Craniofacial Program several times during the first year after surgery for checkups, then usually once a year for the next several years. We use 3D imaging during many of these appointments to help doctors keep track of the growth of your child’s head.

As a parent or caregiver, you may be nervous about your child's head once the bone is removed. Our Craniofacial Program team will answer any questions you may have about caring for your child and ensure they have a successful and safe recovery.