Living with Cloverleaf skull syndrome
A form of early skull fusion that gives the skull a three-lobed shape and can affect the brain and development.
Understanding Cloverleaf skull syndrome
It involves several skull sutures. The shape ranges in severity, with a towering forehead, bulging temples, and a flat back of the skull. Features include downslanting eyelid openings, a flat midface, and very bulging eyes. It can be complicated by hydrocephalus (extra fluid in the brain), pressure in brain veins, developmental delay or intellectual disability, and a hindbrain herniation.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but the summary describes:
- Three-lobed (cloverleaf) skull shape
- Bulging forehead and temples
- Very bulging eyes
- Flat midface
- Extra fluid in the brain (hydrocephalus)
- Developmental delay 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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 lists this condition as autosomal dominant but doesn't name a gene.
Also known as: clover leaf skull deformity; isolated cloverleaf skull syndrome; kleeblattschadel; kleeblattschadel deformity
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cloverleaf skull syndrome.
Explore research for Cloverleaf skull syndrome
Explore actively recruiting Cloverleaf skull syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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