|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Vascular Birthmarks
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:
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, and that you ask to contact one or two of these families. Treatment options can include:
New advances and procedures concerning Vascular Birthmarks are constantly being
developed. Be an advocate for your child!
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 thirty-two craniofacial teams located in 20 states, the District of
Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial
teams. Please contact FACES 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 listing
below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: faces@faces-cranio.org
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. Resources include newsletters, information about craniofacial conditions, and
networking opportunities.
Hemangioma and Vascular Birthmarks Foundation
P. O. Box 106
Latham, NY 12110
(877) 823-5665
Email: contact@birthmark.org
Website: http://www.birthmark.org
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.
NOVA (National Organization of Vascular Anomalies)
P O Box 0358
Findlay, OH 45839
Email: hemangnews@msn.com
Website: www.novanews.org
Excellent website, includes newsletter, message board, physicians list and other
resources.
The following hospitals have dedicated vascular anomalies programs:
Vascular and Birthmarks Institute of New York
1725 York Avenue, Suite 2E
New York, NY 10128
(212) 987-0979
Milton Waner, MD
Vascular Anomalies Program
Vascular Anomalies Center
Children's Hospital - Boston
300 Longwood Avenue
Boston, MA 02115
(617) 355-5226
Website: www.childrenshospital.org/vascularanomalies
Watch specialists from Children’s Hospital Boston’s Vascular Anomalies Center
(VAC) as they discuss and diagnose unique cases that have been presented to them by other
institutions for their internationally recognized expertise. The VAC tracks the largest
clinical volume of vascular anomaly patients in the world with more than 1,200 patients
evaluated annually. Their weekly Vascular Anomalies Conference serves as a forum for
interdisciplinary collaboration and dissemination of academic and clinical information.
Vascular anomalies, which include benign tumors (such as hemangiomas), vascular tumors and
vascular malformations are commonly misdiagnosed. Inadequate or inappropriate treatment
often follows. To ensure the best outcomes, individuals with vascular anomalies require
the combined expertise of an experienced, interdisciplinary team of specialists whose
primary focus is the management of these complex disorders. The May 1 Webcast will
highlight the VAC team as they evaluate cases, provide diagnoses and treatment
recommendations, and answer questions e-mailed to them from physicians and families live.
All viewers are encouraged to e-mail questions during the broadcast. To sign up for an
e-mail reminder for the live broadcast, doctor’s comments or to watch an archive of
the Webcast, go to: http://www.or-live.com/childrenshospitalboston/1740
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children
who have special health care needs.
Birthmarks: A Guide to Hemangiomas and Vascular Malformation. Written
by Linda Shannon, MS, and Connie Marshall, RN, MSN, with Milton Waner, MD. Published by
Women's Health Publishing.
Toll free (888) 235-7947. $18.94 plus $3.50 shipping.
This 171-page paperback includes the latest treatments, support information, and before
and after photos for anyone dealing with facial birthmarks. Excellent resource!
Strength, Courage, & Confidence: What Facial Difference Teaches Us. Written by Jennifer Wallace. Excellent book by someone who was born with a hemangioma and endured years of reconstructive surgeries to fix it. It will make you laugh; it will make you cry; and it will give young people dealing with hemangiomas and their parents, hope for the future. To purchase this book, send check or money order for $20 to P.A.L.S. Foundation; P. O. Box 320847; Los Gatos, CA 95032-0114; or email: palsfoundation@ix.netcom.com
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Order from Amazon.com
if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional, social,
educational, legal, and financial challenges presented by facial differences of their
children.
Online resource guide on vascular and pigmented birthmarks and treatments: http://www.birthmarks.com
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Last modified on: Thursday, April 19, 2007 02:49 PM
