Living with Craniosynostosis syndrome
Early closing of the joints between a baby's skull bones, which can change head shape and sometimes affect the brain.
Understanding Craniosynostosis syndrome
Normally the bones stay separate until about age 2 while the brain grows. If only one suture closes early, which is most common, the result may be only an unusual head shape. If several close, brain growth can be restricted, which can lead to higher pressure in the skull, seizures, vision loss, or intellectual disability. It can occur alone or as part of a syndrome. Not every child needs surgery, and children who have surgery and are otherwise healthy generally have no long-term complications, especially with one suture.
Signs & symptoms
Symptoms vary depending on how many sutures close early. GARD's summary mentions these:
- Unusual head shape
- Higher pressure in the skull
- Seizures
- Vision problems
- Learning or intellectual disability
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Expert lists: World Craniofacial Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Craniosynostosis and Positional Plagiocephaly Support Inc and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Most isolated cases happen randomly (sporadic) with no known cause. Some are due to changes in several genes. When craniosynostosis is part of a syndrome, the cause and inheritance depend on the syndrome, and most are autosomal dominant.
Also known as: congenital ossification of cranial sutures; congenital ossification of sutures of skull; cranial suture synostosis; craniostenosis; craniostosis; craniosynostosis
Patient organizations
- Craniosynostosis and Positional Plagiocephaly Support IncCraniosynostosis syndrome · United States
- FACES: The National Craniofacial AssociationCraniosynostosis syndrome · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Craniosynostosis syndrome.
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