Overview
Non-syndromic bicoronal craniosynostosis is a condition where two specific skull joints — called the coronal sutures, one on each side of the head — fuse together too early before birth or in early infancy. Normally, these flexible joints allow the skull to grow as the brain develops. When both coronal sutures close too soon, the skull cannot grow forward properly, which causes the forehead to look flat or pushed back, and the head may appear wider and taller than usual. This condition is sometimes called 'bilateral coronal craniosynostosis' or 'bicoronal synostosis.' Unlike syndromic forms of craniosynostosis (which occur as part of broader conditions like Apert or Crouzon syndrome), non-syndromic bicoronal craniosynostosis happens on its own without other major birth differences. The main concern with this condition is that the fused skull can limit the space the growing brain needs. This can raise pressure inside the skull, which may affect vision, development, and comfort. Most children with this condition look noticeably different at birth, with a flattened forehead and wide head shape. Some children may also have mild differences in eye position or facial appearance. The good news is that treatment is available and effective. Surgery — typically performed in the first year of life — reshapes the skull to give the brain room to grow and improve the child's appearance. With timely surgery and follow-up care, most children do very well and lead healthy, normal lives. A team of specialists including neurosurgeons and craniofacial surgeons work together to plan the best approach for each child.
Also known as:
Key symptoms:
Flat or pushed-back forehead (brachycephaly)Head that looks wider and taller than usualEyes that appear more widely spaced or slightly bulgingA ridge or hard line felt along the top sides of the head where the sutures have fusedAsymmetry or unusual shape of the faceRaised pressure inside the skull (intracranial hypertension) in some childrenVision problems if eye sockets are affectedHeadaches in older childrenDevelopmental delays in some cases, particularly if brain pressure is not treatedSleep-disordered breathing in some children
Clinical phenotype terms (11)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Non-syndromic bicoronal craniosynostosis.
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Specialists
View all specialists →No specialists are currently listed for Non-syndromic bicoronal craniosynostosis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Non-syndromic bicoronal craniosynostosis.
Community
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Caregiver Resources
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which type of surgery do you recommend for my child, and why?,What is the best age for my child to have surgery, and what happens if we wait?,Should my child have genetic testing, and what would the results mean for our family?,How will we know if my child's brain pressure is too high, and how often will this be checked?,What developmental or vision problems should I watch for after surgery?,Is there a chance my child will need more surgery as they grow older?,Are there support groups or resources for families dealing with craniosynostosis?
Common questions about Non-syndromic bicoronal craniosynostosis
What is Non-syndromic bicoronal craniosynostosis?
Non-syndromic bicoronal craniosynostosis is a condition where two specific skull joints — called the coronal sutures, one on each side of the head — fuse together too early before birth or in early infancy. Normally, these flexible joints allow the skull to grow as the brain develops. When both coronal sutures close too soon, the skull cannot grow forward properly, which causes the forehead to look flat or pushed back, and the head may appear wider and taller than usual. This condition is sometimes called 'bilateral coronal craniosynostosis' or 'bicoronal synostosis.' Unlike syndromic forms of
At what age does Non-syndromic bicoronal craniosynostosis typically begin?
Typical onset of Non-syndromic bicoronal craniosynostosis is neonatal. Age of onset can vary across affected individuals.