Treating the Hemangioma

The standard treatment for a “complicated” infantile hemangioma—one that is large, near a vital organ like the eye, or likely to cause scarring—is a medication called propranolol ^[1]. Propranolol is a beta-blocker, a type of medicine that has been used for decades to treat heart conditions, but it is now the first-line choice for shrinking hemangiomas ^[2].

Is Propranolol Safe for PHACE Syndrome?

Because PHACE syndrome can involve differences in the blood vessels of the brain and heart, parents often worry about using a medication that affects heart rate and blood pressure.

Research specifically looking at infants with PHACE from a small observational cohort is generally reassuring. In a large study of 76 children with PHACE who were treated with oral propranolol, there were no serious adverse events, such as strokes or heart attacks ^[1]. While the risk is not zero, and this does not prove it is entirely as safe as in children without PHACE, the study found that children with PHACE did not have more serious complications than children without the syndrome ^[1].

The primary theoretical concern is that if a child’s brain blood vessels are very narrow or missing, a sudden drop in blood pressure could reduce blood flow to the brain ^[3][4]. This is why doctors typically perform a full workup—including an MRI/MRA and a heart exam—before starting the medication ^[5][6]. However, if a hemangioma is urgently threatening the airway, vision, or another vital function, specialists may initiate supervised treatment while evaluation proceeds rather than delaying care.

Airway Risks and Emergency Signs

If the hemangioma is on the “beard” area (lower face/neck), it may involve the airway. Seek urgent care for stridor (noisy breathing), increased work of breathing, cyanosis (blueness), or inability to feed. Not every facial hemangioma involves the airway, but these signs warrant prompt assessment.

Monitoring Your Child During Treatment

When your child begins propranolol, the medical team will follow a careful, clinician-directed protocol to ensure they tolerate the medicine well. Common steps include:

• Observation during the first dose: Your child may stay in the clinic or hospital for a few hours after the first dose to check their heart rate and blood pressure ^[7].
• Low and slow dosing: Treatment usually starts at a low dose and is increased gradually over several weeks to reach the full “target” dose ^[8][3]. Do not adjust the dose based on home blood-pressure readings.
• Feeding is key: To prevent hypoglycemia (low blood sugar), propranolol must always be given during or immediately after a full feeding ^[2][9]. If your child is sick, vomiting, or refusing to eat, you should generally skip the dose and call your doctor ^[9]. Never double a missed dose.
  • Warning Signs of Hypoglycemia: Unusual sleepiness, pallor, sweating, limpness, poor responsiveness, or seizure. Seek emergency care immediately.

Common but minor side effects can include changes in sleep patterns, cold hands or feet, or mild diarrhea ^[1][9]. Watch out for wheezing or bronchospasm, and follow your prescriber’s plan for respiratory illnesses.

Alternative Treatments

While propranolol is the most effective treatment, it may not be suitable for every child, or it may not work fully on its own. In these cases, doctors may consider:

• Corticosteroids: These are powerful anti-inflammatory medicines. They may be used alongside propranolol if the hemangioma is very aggressive, though they are less commonly used as a first choice today because of side effects like irritability or high blood pressure ^[3].
• Sirolimus: This is a newer medication sometimes used for very complex or rare types of hemangiomas that don’t respond to standard treatment, though evidence for its use specifically in PHACE is still limited to individual cases ^[10].
• Laser Therapy: Once the hemangioma has finished shrinking, a laser (such as a pulsed-dye laser) can help remove any remaining redness or thin visible blood vessels on the skin ^[11][12].
• Surgery: In rare cases, if a hemangioma is causing a direct blockage (like in the airway) or if there is significant extra skin left after it shrinks, surgery may be discussed ^[13][14].

Every child with PHACE has a unique “map” of blood vessels, so your medical team will tailor the treatment plan specifically to your child’s anatomy and needs ^[6].