Overview
Congenital hemangioma is a type of benign (non-cancerous) blood vessel tumor that is fully formed at birth. Unlike the more common infantile hemangioma, which appears after birth and grows during the first months of life, a congenital hemangioma is already fully developed when a baby is born. These tumors are made up of abnormal clusters of blood vessels and typically appear as a raised, round, reddish-purple or bluish mass on the skin. They can occur anywhere on the body but are most often found on the head, neck, or limbs. There are three main subtypes of congenital hemangioma. Rapidly involuting congenital hemangioma (RICH) shrinks on its own, usually disappearing within the first 12 to 18 months of life. Non-involuting congenital hemangioma (NICH) does not shrink and remains stable over time. Partially involuting congenital hemangioma (PICH) shrinks somewhat but does not fully go away. In some cases, these tumors can cause complications such as bleeding, heart strain due to increased blood flow through the tumor, or problems with blood clotting. Treatment depends on the subtype and whether complications are present. Many congenital hemangiomas, especially the RICH type, require only observation and monitoring. For tumors that do not resolve, cause symptoms, or lead to complications, treatment options may include surgery, embolization (blocking blood flow to the tumor), or other interventions. Most children with congenital hemangioma have a good long-term outlook.
Key symptoms:
A raised, round lump on the skin present at birthReddish-purple or bluish skin discoloration over the massWarm skin over the tumor due to increased blood flowVisible veins around the tumorA ring of pale or lighter skin surrounding the massBleeding from the surface of the tumorSkin thinning or ulceration over the tumorSwelling in the affected areaHeart strain or fast heartbeat in large tumors (high-output heart failure)Low platelet count or blood clotting problemsResidual skin changes such as loose skin or visible blood vessels after the tumor shrinksLimb size differences if the tumor is on an arm or leg
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
6 eventsYonsei University — PHASE2
University of Texas Southwestern Medical Center — NA
Beijing Tiantan Hospital — EARLY_PHASE1
Boston Children's Hospital — NA
Beijing Tiantan Hospital
University of California, San Francisco
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Congenital hemangioma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Congenital hemangioma at this time.
New trials open frequently. Follow this disease to get notified.
Rare Disease Specialist
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 Congenital hemangioma.
Community
No community posts yet. Be the first to share your experience with Congenital hemangioma.
Start the conversation →Latest news about Congenital hemangioma
Disease timeline:
New recruiting trial: Study on Treatment Decision-Making and Prognostic Follow-Up for Untreated Cerebral Cavernous Malformations
A new clinical trial is recruiting patients for Congenital hemangioma
New recruiting trial: A Prospective Study on the Role of Karl Storz Curved and Straight Fetoscopes (11508AAK and 11506AAK) for Fetoscopic Intrauterine Procedures
A new clinical trial is recruiting patients for Congenital hemangioma
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.What subtype of congenital hemangioma does my child have (RICH, NICH, or PICH)?,Is this tumor likely to shrink on its own, and if so, how long will that take?,Does my child need any imaging tests such as ultrasound or MRI to evaluate the tumor?,Are there any signs of complications I should watch for at home?,Will my child need surgery, and if so, when is the best time to consider it?,Could this tumor affect my child's heart or blood clotting?,What cosmetic outcomes can we expect after the tumor resolves or is treated?
Common questions about Congenital hemangioma
What is Congenital hemangioma?
Congenital hemangioma is a type of benign (non-cancerous) blood vessel tumor that is fully formed at birth. Unlike the more common infantile hemangioma, which appears after birth and grows during the first months of life, a congenital hemangioma is already fully developed when a baby is born. These tumors are made up of abnormal clusters of blood vessels and typically appear as a raised, round, reddish-purple or bluish mass on the skin. They can occur anywhere on the body but are most often found on the head, neck, or limbs. There are three main subtypes of congenital hemangioma. Rapidly invo
How is Congenital hemangioma inherited?
Congenital hemangioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Congenital hemangioma typically begin?
Typical onset of Congenital hemangioma is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Congenital hemangioma?
25 specialists and care centers treating Congenital hemangioma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.