Hemangioma and Vascular Malformation

  • Support for Families at Cincinnati Children’s

    At the Hemangioma and Vascular Malformation Program at Cincinnati Children’s, we encourage families to take advantage of the following resources.

    The Family Support Network at Cincinnati Children’s includes specialists from Child Life, Financial Services, Pastoral Care, the School Intervention Program and Social Work. They can provide:

    • Emotional, psychosocial and spiritual support
    • Assistance with school concerns
    • Community outreach and education
    • Information about additional resources (financial, insurance, community)
    • Assistance with lodging, ground transportation and other concerns. Guest Services at Cincinnati Children’s helps make a stay in Cincinnati more comfortable and convenient.  

    Our Clinical Concierge team schedules multiple medical appointments for families traveling to Cincinnati Children’s from outside the region.

    Families Share Stories of Hope

    At Cincinnati Children’s, we understand that it is helpful and reassuring to hear stories from families in similar situations. Read stories from other families..

    Kids Camp

    The Cancer and Blood Diseases Institute hosts a week-long summer camp every year. “Hem / Onc Kids Camp” takes place at Joy Outdoor Education Center in Clarksville, OH.

    The staff works closely with the Cincinnati Children’s medical team to create a safe, supportive environment for children, no matter what their abilities.

    The camp is an opportunity for kids ages 7-16 to develop new skills, form lasting friendships and build their self-esteem, all while having a great time. Patients are encouraged to bring a sibling.

    Additional Resources

    Other organizations provide extensive support and education for patients and families dealing with vascular anomalies, including:

    • The National Organization of Vascular Anomalies,  a nonprofit organization dedicated to aiding individuals in the management and care of vascular anomalies. Their website provides links to a newsletter and other useful information.
    • Infantile Hemangioma, a disease awareness web site created by Pierre Fabre Pharmaceuticals Inc.
    • CarePages, a free service that allows families to easily create web pages during a health challenge to keep friends and family informed.
 
 
 
 
  • Sheyenne's Story

    Sheyenne Davis was born with a rare and complex array of vascular abnormalities called PHACE.
    Sheyenne Davis was born with a rare and complex array of vascular abnormalities called PHACE syndrome. Doctors near Davis' hometown predicted the newborn wouldn’t live until her first birthday. Rather than settle for putting their baby girl in hospice care, as doctors had advised, Sheyenne’s parents instead sought a second opinion with our Hemangioma and Vascular Malformation Center.Read more