Long-Term Care and Surveillance

Managing PHACE syndrome is a journey that moves from the intensive testing of infancy into a plan for long-term follow-up as needed—the ongoing process of monitoring your child’s health as they grow ^[1][2]. While the “H” (hemangioma) usually shrinks and fades during early childhood, the internal differences in the blood vessels and organs may require a multidisciplinary care team ^[1].

Your Multidisciplinary Care Team

Because PHACE affects several systems, your child will be best served by a team of specialists who communicate with one another. This team typically includes:

• Pediatric Dermatologist: Often the first to identify PHACE and manage the hemangioma ^[3].
• Pediatric Neurologist: Monitors brain blood vessels and manages issues like headaches ^[4].
• Pediatric Cardiologist: Tracks the health of the heart and aorta as the child grows ^[5].
• Ophthalmologist & Audiologist: Monitors vision and hearing, which can change over time ^[6][7].
• Endocrinologist: Monitors growth and thyroid function ^[8].
• Vascular Anomalies Specialist: A doctor (often a surgeon or hematologist) who specializes in complex vessel conditions ^[3].

Individualized Long-Term Follow-Up

There is no “one size fits all” schedule for PHACE, but your team will likely recommend periodic check-ups based on your child’s specific anatomy. A normal baseline study may reduce the need for repeated neuroimaging:

Neurocognitive and Functional Outcomes

Most children with PHACE attend mainstream schools, but outcomes vary with the child’s specific brain, vascular, and cardiac findings. They may face specific challenges as they get older:

• Headaches and Migraines: These are very common in older participants in survey studies, affecting up to 72% of people with PHACE ^[10]. They are often “migraine-like,” involving sensitivity to light or nausea ^[11].
• Learning Differences: About 45% of families report some form of learning difference in survey populations, and roughly 39% of children utilize an Individualized Education Plan (IEP) or similar school supports ^[10][12].
• Stroke Risk: While vessel changes can happen, actual strokes remain very rare, occurring in only about 2% of cases ^[10][4].

Routine developmental surveillance is recommended, with referral for neuropsychological, school, or rehabilitation support when concerns arise.

Knowing When to Call the Doctor

Because “atypical migraines” in PHACE can sometimes look like more serious neurological events, it is important to have a plan.

• Routine Care: Follow your individualized scheduled imaging and specialist visits, even if your child seems perfectly healthy. This “proactive surveillance” is the best way to catch changes early ^[1].
• Emergency Care: Seek immediate medical attention for red flags such as sudden weakness on one side of the body, a sudden change in speech or vision, or a “worst ever” headache ^[13][4].

As your child approaches adulthood, your team will help you transition their care to adult specialists who understand the unique vascular and cardiac “roadmap” of PHACE syndrome ^[1]. By staying connected to a knowledgeable care team, you can help your child navigate these challenges and lead a full, active life.