Craniosynostosis Care
If you’re concerned about the shape of your baby’s head, you may be wondering what’s normal and when to seek care. At University Health, our pediatric craniosynostosis specialists provide expert evaluation, diagnosis and personalized treatment, including minimally invasive and open surgical options. We’re here to help you understand your child’s condition and guide your family through every step of care.
Is My Baby’s Head Shape Normal?
It’s common for a newborn to have a misshapen head immediately after birth. This can be because of the baby's position in the womb or birth canal pressure during delivery. A newborn’s misshapen head typically begins to correct itself days after birth. If it persists, you should ask your child’s pediatrician for an evaluation.
What is Craniosynostosis?
Craniosynostosis is one type of craniofacial difference. A baby’s skull is made up of several bones connected by flexible, fibrous tissues called sutures. These sutures stretch and produce new bone, allowing the skull to expand as the brain grows.
The skull bones usually remain flexible and separate for about 12 to 18 months after birth. Craniosynostosis occurs when one or more sutures close too early, before the brain is fully formed. This early closure can prevent the brain from growing in its natural shape, causing the head to develop an abnormal shape.
The skull bones usually stay flexible and separate for about 12 to 18 months after birth. Craniosynostosis occurs if any suture in the skull closes before the brain fully forms. Early closure means the brain cannot grow in its natural shape. This causes the head to grow in an abnormal shape.
Types of Craniosynostosis
Each type of craniosynostosis has unique symptoms depending on the skull sutures (joints) and bones that grow together too soon.
Craniosynostosis has four main types named according to the affected suture.
Sagittal Synostosis
Sagittal synostosis is the most common single suture synostosis. It mainly affects males. The sagittal suture is on top of the head and runs from the soft spot to the back of the head. When this suture closes before it should, it can cause:
- Long and narrow shaped head, known as scaphocephaly
- Noticeable, protruding forehead
- Pointed back of the head
Your baby’s head may look different depending on whether the suture closes entirely or only part of it closes. There’s a low risk of abnormal brain growth and development with this type of craniosynostosis.
Coronal Synostosis
Coronal synostosis can affect one or both sides of the forehead and frontal lobe. The condition is unicoronal synostosis when a single coronal suture closes too soon. With coronal synostosis, you may notice:
- Deviated (pointed away) nose
- Elevated and tilted eye socket
- Protruding eyes
- Recessed and flattened forehead
- Tilting head to prevent seeing double
Multisuture Synostosis
Multisuture synostosis is a congenital condition that occurs when more than one suture (areas of adjacent bones) close too early. This rare condition is a type of craniosynostosis and can happen in more than 70 different ways.
The most common types of multisuture synostosis are syndromic, meaning there are abnormal formations around other organs, in addition to the combined sutures.
If untreated, multisuture synostosis can cause serious problems like:
- Abnormal head shape
- Pressure on the brain
- Delayed development or not meeting milestones
To treat multisuture synostosis, the child will need to be seen by a multidisciplinary team, which includes a:
- Nurse craniofacial coordinator
- Pediatric neurosurgeon
- Pediatric maxillofacial/craniofacial surgeon
- Orthodontist
- ENT surgeons
- Speech therapy specialist
For a minimally invasive procedure, surgery is done before 4-5 months of age.
In some cases, when children come to University Health after 7 months, a bigger surgery is required (vault reconstruction surgery).
Early diagnosis is key to benefit from a minimally invasive approach, which means shorter hospital stay and faster recovery.
With the minimally invasive surgery, a special helmet is used to help shape the baby’s head.
Metopic Synostosis
Metopic synostosis affects the middle suture at the front of a baby’s forehead that separates the frontal bones. When this suture closes early, it can restrict normal forehead and brain growth.
It can cause:
- Narrow forehead and triangular appearance of the skull
- Smaller space between the eyes
- Upward bump or midline ridge on the forehead
- Wide back of the skull due to the brain growing in that direction
Lambdoidal Synostosis
Lambdoidal synostosis is the least common type of craniosynostosis. The lambdoid suture runs along the backside of your baby’s head. If it closes too early, it can cause:
- Bulge behind the ear on the affected side
- Flattening of the back of the head on one side
- Lower-positioned ear on the affected side
- Sideways tilted skull
Early Diagnosis Is Key
Early diagnosis can help your child get the care they need to support healthy brain growth and development. Craniosynostosis affects every child differently. Some children may experience developmental delays or learning difficulties. Visible differences in the shape of the head or face may also affect a child's social and emotional well-being as they grow
Craniosynostosis Treatment Expertise
Treatment for craniosynostosis usually involves surgery to correct the fused suture, relieve pressure on the brain and allow the brain and skull to grow properly. Depending on your child’s age and condition, treatment may involve minimally invasive surgery or traditional open surgery.
Minimally invasive procedures remove or release the prematurely fused suture to create room for growth. Open procedures, such as cranial vault reconstruction or fronto-orbital advancement, reshape and reposition skull bones to provide room for the brain to grow and improve the shape of the head.
Our experienced surgical team will determine the best treatment approach for your child and provide care to keep them comfortable and safe before, during and after surgery.
Specialized Pediatric Care Team
The University Health Center for Endoscopic and Open Craniosynostosis Surgery is among the nation's leading centers for diagnosing, treating and advancing care for infants with different types of craniosynostosis.
Your child will receive care from a multidisciplinary team of pediatric specialists who work together to meet their individual medical needs. Dr. Izabela Tarasiewicz is the neurosurgeon that will be directly involved with your child's care.
Other members of your multidisciplinary pediatric care team may include:
- Nurse coordinator
- Geneticists
- Ophthalmologists (eye doctors)
- Otolaryngologists (ear, nose and throat doctors)
- Audiologists (hearing doctors)
- Pediatric nurses
- Social workers
- Speech therapists
- Orthodontist
- Pediatric dentist
- Pediatric developmental provider
- Cranial remolding program
What to Expect at Your First Visit
Your child's primary care provider will refer you to our craniofacial team. At your first visit with us, you can expect:
- The craniofacial team to order a CT scan of your child, if needed
- If the CT shows concerns for craniosynostosis, we will help you schedule an appointment with surgeons
- A one-hour visit with surgeons to discuss the option of surgery
Advantages of Choosing Us
Our craniofacial program attracts patients from around the country because we offer:
- Comprehensive care all under one roof
- Virtual surgical planning for craniosynostosis treatment to improve your child’s recovery
- Full scope of specialized care and information for any craniofacial difference to put you and your child at ease
- Highly skilled, multispecialty team
- Minimally invasive procedures for craniosynostosis that reduce scarring and the need for blood transfusions
- Minimal hospital stays after surgery unless your child needs additional monitoring or treatment
- Specialized cranial remolding program
Craniosynostosis Care Collaboration
Count on us to develop a safe, coordinated treatment plan for your child. When you choose University Health for care, you don’t have to worry about managing your child’s craniosynostosis treatment with different specialists. All of the providers and care you need are available through us.
