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Health Information For Parents
Craniosynostosis is when one or more seams between bones in a child’s skull close too soon. When this happens, the skull can’t grow as it should, and develops an unusual shape.
Babies’ skulls are made of several bones that fit together like a puzzle. At birth, the borders between the bones (called cranial sutures) are not yet solid. This lets the skull expand, leaving the “soft spot” (or fontanelle).
Normally, cranial sutures:
But in craniosynostosis (kray-nee-oh-sin-oss-TOE-sis), one or more sutures close, either before birth or within a few months after. Craniosynostosis that’s not corrected can cause pressure inside the skull (intracranial pressure). This can lead to developmental problems, headaches, and brain damage.
Kids with craniosynostosis have an irregular head shape. Their head may look smaller, longer, wider, or more narrow than usual. Or, the two sides of the head may be uneven.
Parents or doctors may not notice a baby has an unusual head shape until a few weeks after birth. That’s because it’s normal for a baby’s head to change shape in the early weeks of life.
A baby with craniosynostosis may show signs there’s a problem, such as:
Doctors don’t always know why a child has craniosynostosis. Several health syndromes are linked to craniosynostosis, so doctors may recommend genetic testing.
Sometimes, doctors see craniosynostosis on ultrasound scans before a baby is born. Other times, they find the condition when a baby is born or a few weeks later.
If doctors think a baby might have craniosynostosis, they may order tests, such as X-rays or a computed tomography (CT) scan. Then, they’ll work with a neurosurgery team or a cleft and craniofacial team to confirm the diagnosis.
Often, a team of doctors works together to find the best treatment for a child with craniosynostosis. The team may include specialists in:
Babies with craniosynostosis usually need surgery during their first year of life. A neurosurgeon (sometimes with the help of a plastic surgeon) will remove the closed suture(s) to leave a gap between the pieces of bone that form the skull. Children who have surgery for craniosynostosis usually do well.
A baby with craniosynostosis needs regular checkups. During visits, the doctor will examine your baby and pay close attention to your child’s development. The doctor will tell you if your child needs regular eye exams and other care to help with learning.
It is important to find a specialized cleft and craniofacial team to care for your child. Ask your doctor for recommendations. Or search online at:
It also can help to talk with other parents who have a child with craniosynostosis. Ask your doctor to recommend a local support group, or look online at:
Some birth defects are minor and cause no problems; others cause major disabilities. Learn about the different types of birth defects, and how to help prevent them.
If your child has a birth defect, you don’t have to go it alone – many people and resources are available to help you.
A head CAT scan is a painless test that uses a special X-ray machine to take pictures of a patient’s brain, skull, and sinuses, as well as blood vessels in the head. It might be done to check for any number of conditions.
Babies can develop a flat spot on the back of their heads, usually from sleeping in the same position too long. Alternating your baby’s sleep position and providing lots of “tummy time” can help.
Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.
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