Partially involuting congenital hemangioma

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:458785D18.0
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Partially involuting congenital hemangioma (PICH) is a rare type of blood vessel tumor that is fully formed at birth. Unlike the more common infantile hemangiomas that grow after birth, congenital hemangiomas are already present and fully developed when a baby is born. PICH is one of three subtypes of congenital hemangioma. The other two are rapidly involuting congenital hemangioma (RICH), which shrinks quickly after birth, and non-involuting congenital hemangioma (NICH), which does not shrink at all. PICH falls in between — it partially shrinks during the first year or two of life but then stops shrinking and remains as a stable lesion. PICH typically appears as a raised, round, reddish-purple or bluish mass on the skin. It can occur anywhere on the body but is most commonly found on the head, neck, or limbs. The tumor may feel warm to the touch and can have visible blood vessels on its surface. Some lesions may have a pale ring or halo around them. While PICH is not cancerous and does not spread to other parts of the body, it can cause cosmetic concerns and, depending on its location and size, may occasionally lead to complications such as bleeding or skin breakdown. Treatment for PICH depends on the size, location, and symptoms. Many cases are monitored over time with a watch-and-wait approach. If the remaining lesion causes cosmetic or functional problems after partial shrinkage has stopped, surgical removal may be considered. Unlike infantile hemangiomas, PICH generally does not respond to medications like propranolol or corticosteroids.

Key symptoms:

Raised reddish-purple or bluish skin mass present at birthWarm area of skin over the tumorVisible blood vessels on the surface of the lesionPale ring or halo around the tumorPartial shrinkage of the mass during infancy that then stopsRemaining firm or soft lump on the skinSkin discoloration at the site of the lesionOccasional bleeding from the surface of the tumorSkin breakdown or ulceration over the mass in some casesCosmetic changes to the affected area

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Partially involuting congenital hemangioma.

View clinical trials →

No actively recruiting trials found for Partially involuting congenital hemangioma at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Partially involuting congenital hemangioma community →

No specialists are currently listed for Partially involuting congenital hemangioma.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Partially involuting congenital hemangioma.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Partially involuting congenital hemangiomaForum →

No community posts yet. Be the first to share your experience with Partially involuting congenital hemangioma.

Start the conversation →

Latest news about Partially involuting congenital hemangioma

No recent news articles for Partially involuting congenital 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 can you tell if my child's hemangioma is a PICH rather than another type of vascular tumor?,How much shrinkage can we expect, and when will we know if it has stopped shrinking?,What signs should I watch for that would require urgent medical attention?,At what point should we consider surgical removal of the remaining lesion?,Will the lesion leave permanent skin changes or scarring?,Are there any restrictions on my child's activities because of this condition?,Should my child be seen by any other specialists?

Common questions about Partially involuting congenital hemangioma

What is Partially involuting congenital hemangioma?

Partially involuting congenital hemangioma (PICH) is a rare type of blood vessel tumor that is fully formed at birth. Unlike the more common infantile hemangiomas that grow after birth, congenital hemangiomas are already present and fully developed when a baby is born. PICH is one of three subtypes of congenital hemangioma. The other two are rapidly involuting congenital hemangioma (RICH), which shrinks quickly after birth, and non-involuting congenital hemangioma (NICH), which does not shrink at all. PICH falls in between — it partially shrinks during the first year or two of life but then st

How is Partially involuting congenital hemangioma inherited?

Partially involuting congenital hemangioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Partially involuting congenital hemangioma typically begin?

Typical onset of Partially involuting congenital hemangioma is neonatal. Age of onset can vary across affected individuals.