This is a really rare disorder. It's not the classic infant hemangioma that goes away. You need somebody who really sees a lot of vascular anomalies to make this diagnosis and help with treatment options.
--Cameron C. Trenor III, MD
Are you concerned about a birthmark on your child? Birthmarks are common in infants, and many of them go away on their own or only need to be addressed cosmetically. However, some birthmarks are caused by tumors in the cells of your child’s blood vessels; these are more serious and need to be monitored and, in some cases, treated.
Kaposiform hemangioendothelioma (KHE) is one of these kinds of rare tumors. Fortunately, it's benign (non-cancerous). And the dedicated, compassionate staff at Children’s Hospital Boston is incredibly well qualified to care for your child.
Here’s what you need to know about KHE:
- KHE is not cancer. While we refer to KHE as a tumor, it’s a benign tumor, which means it doesn't metastasize and spread to other locations in your child’s body. “Tumor” simply means abnormal growth.
- It’s treatable. Our doctors use different medications to stop the growth of the tumor and increase your child’s platelet count. Read more in our Treatment & Care section.
- KHE is not associated with regular infantile hemangiomas, although it’s sometimes misdiagnosed as a hemangioma. For more information, see the Diagnosis section.
- It’s often accompanied by a potentially serious condition called Kasabach-Merritt phenomenon, which occurs when the tumor traps and destroys platelets in your child’s blood, leading to an increased risk of bleeding.
How Children’s approaches KHE
Because kaposiform hemangioendothelioma is so rare, very few doctors have experience diagnosing and treating KHE. Here at Children’s Vascular Anomalies Center, we have the world’s largest database of patients with vascular anomalies, including more than 150 with KHE. When doctors anywhere in the world have questions about whether a child’s birthmark may be KHE and what to do about it, they often call us. Our physicians have evaluated more children with KHE than any other hospital in the world.
Additionally, we approach each patient with decades of experience involving multiple disciplines, including surgery, plastic surgery, hematology-oncology, dermatology and interventional radiology. We are actively reviewing our extensive database to redefine the best therapies and long-term outcomes for KHE.
Children’s Vascular Anomalies Center has the largest database in the world of children who have experienced Kasabach-Merritt phenomenon — currently more than 125 cases of vascular anomalies with KMP. As our database grows, it will help shine more light on this rare and often misunderstood condition.
Reviewed by Cameron C. Trenor III, MD,
© Children’s Hospital Boston, 2010