Overview
Non-syndromic sagittal craniosynostosis (also called isolated sagittal craniosynostosis or scaphocephaly) is a condition where the sagittal suture — a flexible joint that runs from front to back along the top of a baby's skull — fuses too early before birth or shortly after. Normally, this suture stays open during infancy to allow the brain to grow. When it closes too soon, the skull cannot expand sideways, so it grows longer and narrower instead. This gives the head a distinctive elongated, boat-shaped appearance, which is why the condition is sometimes called scaphocephaly (from the Greek word for 'boat'). It is the most common type of craniosynostosis. Most children with this condition have a normal brain and normal intelligence. However, if left untreated, the restricted skull growth can put pressure on the developing brain, potentially causing headaches, vision problems, or developmental delays. The good news is that surgery — usually performed in the first year of life — can reshape the skull and relieve pressure. With timely treatment, most children go on to live healthy, normal lives. Early diagnosis and referral to a specialist team are key to the best outcomes.
Also known as:
Key symptoms:
Long, narrow head shape (front to back is longer than normal)Narrow width of the head from side to sideA raised ridge running along the top of the head where the suture has fusedProminent forehead (bossing at the front of the skull)Prominent back of the head (occipital bossing)Headaches (in older or untreated children)Increased pressure inside the skull (in untreated cases)Vision problems (in untreated or severe cases)Developmental delays (in a minority of untreated cases)Difficulty with learning or attention (in some children, especially if untreated)
Clinical phenotype terms (4)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Non-syndromic sagittal craniosynostosis.
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Specialists
View all specialists →No specialists are currently listed for Non-syndromic sagittal 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 sagittal craniosynostosis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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?,What are the risks and benefits of each surgical option?,Will my child need helmet therapy after surgery, and for how long?,How will we monitor my child's brain development and vision after surgery?,Is there a chance my other children or future children could have this condition?,What signs should I watch for at home that would mean I need to seek emergency care?
Common questions about Non-syndromic sagittal craniosynostosis
What is Non-syndromic sagittal craniosynostosis?
Non-syndromic sagittal craniosynostosis (also called isolated sagittal craniosynostosis or scaphocephaly) is a condition where the sagittal suture — a flexible joint that runs from front to back along the top of a baby's skull — fuses too early before birth or shortly after. Normally, this suture stays open during infancy to allow the brain to grow. When it closes too soon, the skull cannot expand sideways, so it grows longer and narrower instead. This gives the head a distinctive elongated, boat-shaped appearance, which is why the condition is sometimes called scaphocephaly (from the Greek wo
How is Non-syndromic sagittal craniosynostosis inherited?
Non-syndromic sagittal craniosynostosis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Non-syndromic sagittal craniosynostosis typically begin?
Typical onset of Non-syndromic sagittal craniosynostosis is neonatal. Age of onset can vary across affected individuals.