New advances and procedures concerning Vascular Birthmarks are constantly being developed. Be an advocate for your child!
What is a Vascular Birthmark?
Very often, different doctors will use different terms to describe the same lesion. Advances are rapidly taking place in this field of study, so be sure you and your healthcare provider study the most recent materials. The correct treatment requires the correct diagnosis.
Generally, Vascular Birthmarks are divided into two categories: Hemangiomas and Vascular Malformations.
What are Hemangiomas?
Hemangiomas are benign (non-cancerous) tumors that may or may not be apparent at birth, but always become visible within one to four weeks after birth. They usually occur on the head or neck, but they can occur anywhere, including the internal organs. The hemangioma will grow and change for the first 12 months of life and then "involute" or regress. The involution can last from three to 10 years.
What are Vascular Malformations?
Vascular Malformations are benign (non-cancerous) lesions that are present at birth, but which may not be visible for weeks or months after birth. Unlike hemangiomas, vascular malformations do not have a growth cycle and then regress -- they continue to slowly grow throughout life.
There are five types:
Port Wine Stains: Always present at birth and thought to be associated with a deficiency in the nerve supply to the blood vessels.
Venous: Often confused with a hemangioma, these malformations will always grow, are soft to the touch, and the color disappears when compressed. Most commonly found on the jaw, cheek, tongue, and lips.
Lymphatic: Formed when excess fluid accumulates within the lymphatic vessels.
Arteriovenous: Caused when an abnormal amount of blood goes into the capillary beds and engorges the vessels.
Mixed: A combination of any of the other four types.
Why did this happen?
Vascular Birthmarks are not the result of anything the mother did or did not do during pregnancy. The causes are currently being studied and there appears to be an inherited cause, but a proven genetic link has not been found.
Will my child need surgery?
Depending on the type of vascular birthmark, surgery may be recommended; however, the importance of obtaining a correct diagnosis is extremely important and often difficult.
Before any surgery or treatment begins:
be sure that your surgeon is extremely experienced in treating vascular birthmarks
that you have been given treatment options
that you ask how many such treatments the doctor has performed
that you ask to see before and after pictures of similar cases
that you ask to contact one or two of these families
Treatment options can include:
Steroid Treatment: Ask about medication that can be given for stomach upset which often accompanies this treatment.
Surgical removal of the lesion
Combinations of the above
How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us for details.
Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. The information below will help you get started. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.)
FACES: The National Craniofacial Association
We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.
Hemangioma and Vascular Birthmarks Foundation
This network is dedicated to providing information to families, physicians, health care providers, and the insurance industry regarding the diagnosis and treatment of Vascular Birthmarks. They refer patients for treatment and diagnosis.
Phone: (877) 823-5665
The following hospitals have dedicated vascular anomalies programs:
Arkansas Children's Hospital Vascular Anomalies Center
Vascular and Birthmarks Institute of New York
Vascular Anomalies Program
The Cleveland Clinic Foundation
Vascular Anomalies Center
Children's Hospital - Boston
Phone: (800) 355-7944
National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.
A Guide to Hemangiomas and Vascular Malformation
Written by Linda Shannon, MS, and Connie Marshall, RN, MSN, with Milton Waner, MD.This 171-page paperback includes the latest treatments, support information, and before and after photos for anyone dealing with facial birthmarks. Excellent resource!Available at: www.amazon.com