The Vascular Birthmarks Foundation Dr. Linda Rozell-Shannon, PhD President and Founder

Capillary hemangioma

What is a hemangioma?

A hemangioma is a benign, blood-filled tumor. Fourteen in 100 children are born with a vascular birthmark; most are hemangiomas. Ten percent of these children require the opinion of a specialist while the others have insignificant hemangiomas or lesions which are small and located in an area covered by clothing. Early and accurate diagnosis and treatment is key.

Hemangiomas occur in up to 12 percent of all infants by one year of age. They occur 5 times more often in females than in males and predominantly in Caucasians. Twenty-three percent of babies born with hemangioma are very low birthweight (2.2 pounds or less). Low birthweight infants (less than 2.2 pounds) have a twenty six percent chance of developing a hemangioma. The reason for the high incidence of vascular lesions in low birthweight children is unknown.

Hemangioma are the most common benign tumor in infants. The word tumor is not to be confused with cancer. A hemangioma is not a cancer. Hemangioma and vascular malformations are both vascular lesions. Many vascular malformations are mistakenly labeled as hemangiomas. We know now that not all vascular lesions are hemangiomas, and not all hemangiomas go away.

Hemangioma and vascular malformations are vastly different from each other; they have different outcomes, and they are treated differently. To assure the best outcome in treating any congenital lesion (birthmark) the doctor has to first be sure what it is. Early and accurate diagnosis leads to the correct treatment. The wrong diagnosis leads to treatment that is useless.

What are the most common hemangiomas?

Hemangioma on headApproximately eighty three percent occur on the head and neck area. The remaining seventeen percent appear throughout the the rest of the body (both externally and internally). In the early stages some appear either as bluish or reddish spots or flat patches. A hemangioma is rarely fully grown at birth.

Hemangiomas that are flat and appear reddish in color are called “superficial” and those that are deep beneath the skin and appear bluish in color are called “deep” hemangiomas. When a hemangioma is both deep and superficial it is called a “compound” hemangioma. The correct diagnosis is critical for proper treatment.

How do hemangiomas grow?

Approximately thirty percent of all hemangiomas are visible at birth. The majority of hemangiomas don’t make their presence known until the first few weeks or even months after birth. The remaining seventy percent become visible within one to four weeks after birth. Rarely are hemangiomas fully grown at birth.

The most rapid and significant growth occurs between 1 and 3 months of age and that growth is completed by 5 months of age in most cases. Because many Infantile Hemangiomas leave behind permanent skin changes, there is a window of opportunity to treat higher-risk infantile hemangiomas and optimize outcomes.

What is a typical treatment protocol?

Hemangioma at 10 weeks and at one year, after treatment with propranolol

Early intervention and/or referral (ideally by 1 month of age) is recommended for infants who have potentially problematic Infantile Hemangiomas. When systemic treatment is indicated, propranolol is the drug of choice at a dose of 2 to 3 mg/kg per day. Early and accurate diagnosis is key.

Treatment typically is continued for at least 6 months and often is maintained until 12 months of age (occasionally longer). Topical timolol may be used to treat select small, thin, superficial Infantile Hemangiomas. Surgery and/or laser treatment are most useful for the treatment of residual skin changes after involution and, less commonly, may be considered earlier to treat some IHs.

What is involution?

Hemangiomas can grow for up to 18 months and then begin a long slow regression known as involution. This involution can last from 3- 10 years. While all hemangiomas eventually ‘involute” the result is not always cosmetically acceptable. Early intervention has been shown to reduce the need for corrective surgery after “involution” has occurred; or to, at least, minimize extensive corrective surgeries in the future. Psycho-social scarring which occurs when a child has been forced to live with a facial deformity until “involution” has been completed can be avoided by early, aggressive intervention.

Is a hemangioma life threatening?

In some cases, hemangiomas can be life threatening or severely problematic (interfering with eating, breathing, seeing, hearing, speaking, etc.) and require immediate aggressive intervention. Hemangiomas that grow internally can be very dangerous. They are difficult to detect and when they are detected, the infant is often in need of immediate intervention. Internal hemangiomas (referred to as visceral) occur in the liver, intestines, airway and brain. Infants who have what is referred to as hemangiomatosis ( multiple hemangiomas) are suspect for internal lesions. When an infant has more than 3 hemangiomas, an ultrasound should be done of the entire body to rule out internal lesions. Jaundice may be a sign of liver hemangiomas, blood in the stool may be a sign of hemangiomas on the intestines and stridor (croupy cough and difficulty breathing) may be a sign of airway hemangiomas.

Was it something I did?

If you’re a parent with a child who has a hemangioma, you should not feel guilty, as the occurrence or appearance of these birthmarks has not been determined. The important thing to remember is that accurate diagnosis and early intervention is key. Hemangiomas, like people, come in all shapes and sizes. Some are small and hardly noticeable, while others are large and disfiguring. Here’s some further information from the Mayo Clinic.

Are hemangioma genetic?

Hemangioma may run in families, but a proven genetic or chromosomal link has yet to be found. Studies are under way to determine if there is a genetic link. The goal of research is to find a cause that can one day lead to prevention.


AAP GUIDELINES: Hemangioma

Read the 2019 American Academy of Pediatrics (AAP) Clinical Practice Guidelines for the Management of Hemangiomas for the latest in research and treatment. Visit the AAP Information Page for Infantile Hemangioma Resources. Share these guidelines to raise awareness and change lives.


VBF FACT SHEET: Hemangiomas

Click to Download, Save & Share VBF Hemangioma Fact Sheet

Fact Sheet by: Dr. Linda Rozell-Shannon, PhD


MEDICAL RESOURCES

General / Hemangiomas

Congenital Hemangiomas

Facial Hemangiomas

Airway Hemangiomas

Congenital Nonprogressive Hemangiomas (CNH)


RESEARCH STUDIES AND CLINICAL TRIALS


VBF STORIES OF HOPE: Hemangioma Stories

Christine Shannon, Our Founder’s daughter

Christine & Dr. Linda & Dr. Waner:  In the Beginning

Sophia: Born a Fighter

Paige: You are in the Right Place

Alyssa:  Running Her Own Future

Kelsey: Beauty and the Hemangioma

Owen: Dreger Family Celebrates Day of Awareness

Braeden’s Story: Gone But Not Forgotten


Thank you to Dr. Linda Rozell-Shannon, PhD & Sarah Kathryn Kenis, RN for contributing to this content.