Overview
Giant infantile hemangioma is a type of benign (non-cancerous) blood vessel tumor that appears in babies, typically at or shortly after birth. These hemangiomas are larger than typical infantile hemangiomas, often measuring more than 5 centimeters in diameter. They are made up of rapidly growing blood vessels that form a raised, red or bluish mass on or under the skin. Note that this term has been marked as 'obsolete' in medical classification systems, meaning it is no longer used as a separate diagnosis. Instead, these large hemangiomas are now generally classified under the broader category of infantile hemangiomas, with size and complications guiding treatment decisions. Infantile hemangiomas, including large ones, typically go through a growth phase during the first several months of life, followed by a slow shrinking phase that can last years. While many hemangiomas resolve on their own, giant ones can cause serious problems depending on their location. They may interfere with breathing, vision, or feeding, and can sometimes lead to heart strain due to increased blood flow through the tumor. Skin breakdown (ulceration) and bleeding are also possible complications. Treatment depends on the size, location, and whether complications are present. The first-line medication is propranolol (brand name Hemangeol), which was FDA-approved for infantile hemangiomas and has greatly improved outcomes. Other options include corticosteroids, laser therapy, and in some cases surgery. Most children with infantile hemangiomas, even large ones, have a good long-term outlook with appropriate management.
Key symptoms:
Large red or bluish raised mass on the skinRapid growth of the mass in the first weeks to months of lifeSkin ulceration or breakdown over the hemangiomaBleeding from the surface of the hemangiomaDifficulty breathing if located near the airwayVision problems if located near the eyeFeeding difficulties if located near the mouth or throatHeart strain from high blood flow through the tumorSwelling in the affected areaPain or discomfort especially with ulcerationScarring or skin changes as the hemangioma shrinksLow platelet count in very large hemangiomas
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 OBSOLETE: Giant infantile hemangioma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: Giant infantile hemangioma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Giant infantile hemangioma.
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 OBSOLETE: Giant infantile hemangioma.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Giant infantile hemangioma.
Start the conversation →Latest news about OBSOLETE: Giant infantile hemangioma
No recent news articles for OBSOLETE: Giant infantile hemangioma.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 large is my baby's hemangioma, and is it likely to keep growing?,Does this hemangioma pose any risk to my baby's breathing, vision, or heart?,Is propranolol the right treatment for my baby, and what side effects should I watch for?,How often will my baby need follow-up visits and imaging?,What should I do if the hemangioma starts bleeding or develops an open sore?,Will my child likely need surgery or laser treatment later on?,Are there any long-term effects I should be aware of?
Common questions about OBSOLETE: Giant infantile hemangioma
What is OBSOLETE: Giant infantile hemangioma?
Giant infantile hemangioma is a type of benign (non-cancerous) blood vessel tumor that appears in babies, typically at or shortly after birth. These hemangiomas are larger than typical infantile hemangiomas, often measuring more than 5 centimeters in diameter. They are made up of rapidly growing blood vessels that form a raised, red or bluish mass on or under the skin. Note that this term has been marked as 'obsolete' in medical classification systems, meaning it is no longer used as a separate diagnosis. Instead, these large hemangiomas are now generally classified under the broader category
How is OBSOLETE: Giant infantile hemangioma inherited?
OBSOLETE: Giant infantile hemangioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: Giant infantile hemangioma typically begin?
Typical onset of OBSOLETE: Giant infantile hemangioma is neonatal. Age of onset can vary across affected individuals.