Kaposiform Hemangioendothelioma in Children

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Overview

What is kaposiform hemangioendothelioma?

Kaposiform hemangioendothelioma (KHE) may look like a birthmark, but is actually a benign tumor of a child's blood vessels. It's not a cancer; rather, KHE is a vascular anomaly — an abnormal growth of blood vessels. Because it's benign, KHE can grow but doesn't spread to other locations in a child's body.

    • KHE is rare. Only about 1 out of every 100,000 children have this condition.
    • It can appear anywhere on the body, often on the head and neck but also on the
    stomach, back, arms and legs — even inside the chest, abdomen or bones.
    • A mild form of kaposiform hemangioendothelioma, called tufted angioma, is less likely to cause complications or require some therapies.
    • Mild KHE tumors sometimes shrink and fade on their own without any treatment. For others, doctors have multiple treatment options available.
    • KHE is sometimes misdiagnosed as an infantile hemangioma, a much more common vascular lesion. But while both infantile hemangioma and KHE are vascular anomalies, they differ in appearance, complications and treatment.

How Boston Children's Hospital approaches KHE

Because kaposiform hemangioendotheliomas are so rare, very few doctors have experience diagnosing and treating them. The Vascular Anomalies Center (VAC) at Boston Children's has evaluated more children with KHE than any other hospital in the world. The VAC's 25 physicians — representing 16 medical and surgical specialties — draw on those experiences to redefine the best therapies and achieve better long-term outcomes for children with KHE.

The VAC clinic takes an interdisciplinary approach to care with every child they see. It's not uncommon for children on their first visit to the clinic to be evaluated by a whole VAC team at the same time. From there, the team works with you to develop and carry out a comprehensive and coordinated care plan that matches your child's specific needs.

The team brings in the expertise of other Boston Children's departments and services as necessary to provide your child with the best care.

Kaposiform hemangioendothelioma: Reviewed by Cameron C. Trenor III, MD, © Boston Children's Hospital, 2016

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