About Craniosynostosis

What is Craniosynostosis?

The key to treating an infant with Craniosynostosis is accurate early diagnosis and medical treatment. Be sure to bring your infant to well-child visits, so your pediatrician can routinely chart the growth of your infant's head over time. This may help identify the problem early, if it occurs.

An infant’s brain begins to grow before birth and continues to grow throughout the infant’s first three year’s of life. At birth, an infant has 40% of his/her adult brain volume and this increases to 80% by three years of age, and to 90% by seven years of age. 

An infant’s skull consists of bones that are separated by soft joints called "sutures". The "soft spot", or Fontanelle is where the sutures meet on the top of the forehead. As an infant’s brain continues to grow, the sutures continue to grow. Throughout an infant’s first three years of life, an infant’s sutures will close or "fuse" in sequence.

Craniosynostosis is when an infant’s sutures fuse too early and it affects the growth of the brain. Often, the end result is an infant with an abnormally shaped head. Craniosynostosis may involve the premature closure of a single suture or multiple sutures in the case of a syndrome.

Craniosynostosis, if left untreated, can cause severe and permanent damage. An infant may have increased intracranial pressure, seizures, neurological deficiencies, eye problems, misalignment of the spine, and cognitive and developmental delays.

What Causes Craniosynostosis?

The cause of Craniosynostosis is unknown. It is sporadic. It can be present at birth (congenital). It can be hereditary. The hereditary form often occurs with other defects.

However, most cases of Craniosynostosis occur in a family with no history of the condition and children with Craniosynostosis are otherwise healthy and have normal intelligence.

How will I know if my infant has Craniosynostosis?

Your doctor can do a physical examination. The doctor may:

• Measure the width of the infant's head
• Take X-rays of the skull
• Perform an MRI
• Perform a Computed Tomography (CT) scan of the head
• Genetic testing can also be performed on the parents

Are there symptoms of Craniosynostosis?

Some symptoms can include:

• An absence of the normal feeling of a "soft spot" on the newborn's skull
• Early disappearance of the "soft spot"
• A raised hard ridge along the affected sutures
• Unusual head shape or decreased head circumference
• Slow or no increase in the head size over time as the baby grows
• Scalp veins may be very noticeable
• Seizures
• Bulging eyes
• Developmental Delays

What if my infant is diagnosed with Craniosynostosis?

The main treatment for Craniosynostosis is surgery. The surgery is reconstructive.

The goals of the reconstructive surgery are:

• Relieve any pressure on the brain
• Make sure there is enough room in the skull to allow the brain to properly grow
• Improve the appearance of the child's head

What else can I do for my child?

It is critically important to be evaluated and treated by a multidisciplinary craniofacial team. As you go along, you may encounter emotional and social challenges. Remember, do not beafraid to ask questions and ask for help. There are support organizations available to help you.

Interested in learning more about Craniosynostosis?  

**Please keep in mind that we do not recommend these sites.  They are for informational purposes only.  This information should not be viewed as advice on the treatment and/or diagnosis of Craniosynostosis or any other medical condition.  Advice on the treatment or care of a child suffering from CS should be obtained only through consultation with a physician who has examined that child or is familiar with that child's medical history.