Living with Non-syndromic metopic craniosynostosis
A condition in which the seam at the front of a baby's skull closes too early, changing the shape of the forehead.
Understanding Non-syndromic metopic craniosynostosis
It is a form of craniosynostosis that is not part of a larger syndrome. The early closing can give the skull a triangular shape and a narrow forehead, with a prominent brow and eyes set close together. GARD lists newborn and infant years as the usual onset.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Early closing of the metopic suture
- Triangular skull shape (trigonocephaly)
- Narrow forehead
- Prominent brow
- Eyes set close together (hypotelorism)
- Wide nasal bridge
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, eye disease 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); Eye disease specialists (ophthalmologists); 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 World Craniofacial Foundation 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
GARD says changes in genes cause this condition. It can be inherited in an autosomal dominant way, meaning one changed copy of the gene can be enough.
Also known as: isolated metopic craniosynostosis; isolated trigonocephaly; metopic craniosynostosis; non-syndromic metopic suture synostosis; nonsyndromic trigonocephaly; trigonocephaly, isolated
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Non-syndromic metopic craniosynostosis.
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