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Craniosynostosis is a condition in which parts of a baby’s skull fuse together too soon and cause the head to become atypically shaped.
A newborn’s skull is made up of seven major plates of bone separated by sutures, the narrow spaces between the plates. Sutures are where much of the growth of the skull occurs during infancy. Eventually, all of the sutures close as the plates of bone fuse together forming a solid piece of bone. However, most sutures take years to close.
However, when a baby has craniosynostosis, it means that one or more of the sutures closes earlier than expected. When this happens, skull growth at the closed suture slows down or stops, but the brain keeps growing, which causes an increase in growth in the areas where the sutures are open. This leads to an atypical head shape. In some children, craniosynostosis can affect brain growth and development.
Each type of craniosynostosis has its own characteristics. Each type gets its name from the name of the closed suture.
Below are types of craniosynostosis that we frequently see at the Craniofacial Center at Children’s Hospital Colorado. The name of the closed suture is represented in each type (the corresponding head shape is in parentheses.).
Craniosynostosis occurs in babies with and without a family history of the condition. Sometimes, it occurs as part of a syndrome or genetic disorder. There are over 150 genetic syndromes that are known to cause craniosynostosis.
When craniosynostosis is not part of a syndrome (non-syndromic craniosynostosis), it is usually not inherited, which means that it is not passed from a parent to a child. Most cases of craniosynostosis are non-syndromic.
A geneticist at Children's Colorado can help your family understand the cause and future risks related to a diagnosis of craniosynostosis.
Craniosynostosis occurs in about 1 out of every 2,500 newborn babies. There is a 0-4% chance that a sibling born after a child with craniosynostosis will also have the condition. A similar risk exists for children of parents with craniosynostosis.
Learn about the Craniofacial Center at Children’s Hospital Colorado.
Meet the Craniofacial Team.
Find out what to expect before, during and after surgery.
In most cases, craniosynostosis does not cause any symptoms in babies. However, you or your pediatrician may start to notice physical signs of craniosynostosis as soon as your baby is born or a few months later.
Signs of craniosynostosis may include
A difference in head shape doesn’t always mean that your child has craniosynostosis. Your child may have a condition called deformational plagiocephaly, which is related to his or her sleeping position. Or, your child may simply have a normal variation in head shape. Early closure of his or her 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.
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.
At Children’s Colorado, your child’s visit to the Craniofacial Center includes a
Pediatric specialists may need additional tests to confirm the diagnosis and aid in treatment planning. Additional tests may include
At Children’s Colorado, our policy is to image gently. That means our state-of-the-art diagnostic equipment uses the lowest level of radiation possible to obtain clear and accurate images to aid in the diagnosis and treatment of your child. Not only is our equipment made for kids, but our pediatric specialists help kids relax and feel safe during testing.
Specialists in the Craniofacial Center collect all the information from the medical history, physical exam and any imaging that was requested. Together, doctors in the multi-disciplinary team work together to give your family an accurate diagnosis and formulate a treatment plan.
They take into account
Your child’s treatment may include:
Surgery is often the recommended craniosynostosis treatment. The goals of surgery include:
Anesthesia is a combination of medications that puts children in a sleep-like state. Since anesthesia affects children differently than adults, our anesthesiologists are pediatric trained and experienced to keep kids safe during and after surgery. Before craniosynostosis surgery, parents talk with a pediatric anesthesiologist.
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.
Your child’s surgeon may recommend minimally-invasive endoscopic surgery when your baby is between two and four months of age and has only one closed suture. The recommended age depends on the type of craniosynostosis your baby has. Endoscopic surgery may not work as well in older babies or when more than one suture has closed early.
Surgeons perform minimally-invasive surgery through small incisions just big enough to fit surgical instruments through. To see inside your child’s head, surgeons use a small camera while performing surgery.
Open surgery is the traditional surgical method for treating craniosynostosis. Surgeons may recommend open surgery if your baby is older than four to six months of age or has more than one closed suture.
The timing of open surgery depends on the type of craniosynostosis your baby has. Typically, surgeons recommend that babies with sagittal craniosynostosis have open surgery between three and 12 months of age. Babies with coronal or metopic craniosynostosis have surgery between four and nine months of age. However, surgeons may perform open surgery even when your baby is over one year of age.
After most children leave the hospital, they only need over-the-counter pain medicine, and only for several days. Dissolvable stitches usually start to break down on their own within two to four weeks. By that time, surgical scars will be pretty strong, although they will continue to remodel over the next one to two years. Your baby child may take several days or weeks to return to normal sleeping behavior.
You and your baby will return to the Craniofacial Center several times the first year after surgery for checkups, then usually once a year for the next several years. “3D” photography is used during many of these appointments to help doctors keep track of the growth of your child’s head.
As a parent, you may be nervous about your child’s head once the bone is removed. The team in the Craniofacial Center will answer any questions you may have about caring for your child.
Our Craniofacial Center is one of the most experienced programs in the nation. With over 25 years of experience, we are the leading center in the Rocky Mountain Region for craniosynostosis treatment. Our program is the only program in Colorado to be approved by the American Cleft Palate-Craniofacial Association (ACPA).
Patients and families who visit the Craniofacial Center have access to multiple pediatric specialties that all collaborate to treat the whole child. Pediatric specialists who care for patients in the Craniofacial Center include the following: