Overview
Dandy-Walker malformation-facial hemangioma syndrome is an extremely rare condition that combines two main features: a brain abnormality called Dandy-Walker malformation and blood vessel growths (hemangiomas) on the face. The Dandy-Walker malformation involves abnormal development of the back part of the brain (the cerebellum and the fluid-filled space around it called the fourth ventricle). This can lead to a buildup of fluid in the brain (hydrocephalus), which increases pressure inside the skull. The facial hemangiomas are benign (non-cancerous) growths made up of extra blood vessels that appear as red or purple marks on the skin of the face. Children with this syndrome may experience developmental delays, problems with balance and coordination, and intellectual disability due to the brain malformation. The facial hemangiomas can vary in size and location. Some affected individuals may also have other associated abnormalities, including eye problems and other structural differences. Treatment is mainly supportive and depends on the specific symptoms present. Hydrocephalus may require surgical placement of a shunt to drain excess fluid from the brain. Facial hemangiomas may be treated with medications such as propranolol, laser therapy, or surgery depending on their size and impact. Physical therapy, occupational therapy, and special education services can help children reach their developmental potential. Because this condition is so rare, management is best coordinated by a team of specialists familiar with both brain malformations and vascular anomalies.
Key symptoms:
Enlarged head size (macrocephaly)Buildup of fluid in the brain (hydrocephalus)Red or purple birthmarks on the face (hemangiomas)Developmental delaysProblems with balance and coordinationIntellectual disabilitySeizuresIrritability in infantsVision problemsDifficulty with fine motor skillsDelayed speech developmentMuscle tone abnormalitiesHeadaches due to increased brain pressure
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Dandy-Walker malformation-facial hemangioma syndrome.
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Specialists
View all specialists →No specialists are currently listed for Dandy-Walker malformation-facial hemangioma syndrome.
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 Dandy-Walker malformation-facial hemangioma syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
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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.How severe is the Dandy-Walker malformation in my child, and does my child have hydrocephalus?,Will my child need a shunt or other surgery, and what are the risks?,What developmental outcomes can we expect, and what therapies should we start?,How should the facial hemangiomas be treated, and will they improve over time?,Are there any genetic tests that could help us understand the cause or recurrence risk?,What warning signs should I watch for at home that would require emergency care?,How often should my child have follow-up imaging and developmental assessments?
Common questions about Dandy-Walker malformation-facial hemangioma syndrome
What is Dandy-Walker malformation-facial hemangioma syndrome?
Dandy-Walker malformation-facial hemangioma syndrome is an extremely rare condition that combines two main features: a brain abnormality called Dandy-Walker malformation and blood vessel growths (hemangiomas) on the face. The Dandy-Walker malformation involves abnormal development of the back part of the brain (the cerebellum and the fluid-filled space around it called the fourth ventricle). This can lead to a buildup of fluid in the brain (hydrocephalus), which increases pressure inside the skull. The facial hemangiomas are benign (non-cancerous) growths made up of extra blood vessels that ap
How is Dandy-Walker malformation-facial hemangioma syndrome inherited?
Dandy-Walker malformation-facial hemangioma syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Dandy-Walker malformation-facial hemangioma syndrome typically begin?
Typical onset of Dandy-Walker malformation-facial hemangioma syndrome is neonatal. Age of onset can vary across affected individuals.