What is Velo-cardio-facial Syndrome?
Velocardiofacial Syndrome, also known as VCFS or as 22q11.2 Syndrome or as DiGeorge Syndrome, is the most common syndrome associated with cleft palate. Approximately 1 in 2,000-5,000 children are born with VCFS. Characteristics include:
- a long face with a prominent upper jaw
- flattening of the cheeks
- an underdeveloped lower jaw
- a bluish color below the eyes
- a prominent nose with narrow nasal passages
- a long thin upper lip and a down-slanting mouth
- cleft palate or submucous cleft palate
Why did this happen?
Velocardiofacial Syndrome is an autosomal dominant condition. Genetic studies of children with this condition show that a microscopic segment on the long arm of chromosome 22 is missing. The genetic test for diagnosis of this condition is called "FISH analysis" and can be performed in many medical centers. It is not because of anything the mother did or did not do during the pregnancy.
Will this happen to children I have in the future?
If neither parent has VCFS, the chances are small that other children will be born with VCFS. If one parent is affected, there is a 50% chance that he or she will pass VCFS to a child. Genetic testing can be done to identify the presence of VCFS.
What kinds of problems could my child have?
In addition to the physical characteristics common to VCFS, your child could have some of the following problems:
- multiple abnormalities of the heart
- learning disabilities in one or more areas
- hearing loss
- problems with speech
- leg pain
- extremes of behavior
Will my child need surgery?
Depending on the severity of Velocardiofacial Syndrome, your child may have some or all of the following surgeries:
- repair of the cleft palate
- repair of the lower jaw
- reconstructive surgery on the ear
- surgery to repair other facial features
New advances in procedures to treat Velocardiofacial Syndrome 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 sixty-four craniofacial teams located in 27 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
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.
Velocardiofacial Syndrome Education Foundation
PO Box 12591
Dallas, TX 78225
Excellent resource!! This very informative group was started by Dr. Robert Shprintzen and has grown quickly. There are numerous families across the country providing support to new families. This organization has a newsletter, as well as a yearly conference.
Albert Einstein College of Medicine - Center for Craniofacial Disorders
1300 Morris Park Avenue
Dedicated to research and support of those dealing with Velocardiofacial Syndrome.Genetic counseling and opportunities to participate in long range complex research projects are offered.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
Web site: www.healthlaw.org
Provides extensive information on health care law affecting families with children who have special health care needs.
Missing Genetic Pieces: Strategies for Living with VCFS, The Chromosome 22q11.2 Deletion
Written by Sherry Baker-Gomez. Published by Winmark Communications, 2004. (602) 789-9240.
A wonderful website and book, includes developmental, educational, financial and support issues. A comprehensive handbook for families with any genetic disorder or disability.
Yahoo Family Support Group:
http://groups.yahoo.com/group/vcfsfamilysupportThis online discussion group is very active and can provide great non-medical support.
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Web site: www.netnet.net/mums
This organization helps you get in touch with parents in your area whose children also have VCFS.
Children with Facial Difference: A Parent's Guide. Written by Hope Charkins, MSW. Published by Woodbine House, 1996.
Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. If you are unable to find this book in your bookstore, please make an effort to find it on Amazon.com.