Why did this happen?
The exact cause is unknown. The majority appear to be caused by a combination of genetic and environmental factors during the early part of the pregnancy. Clefts may also appear with other syndromes. Click on the following link for a PDF document announcing the results of a new genetic study on clefting.
Will this happen to children I have in the future?
FACES suggests that you be tested by a geneticist. Cleft lip, with or without cleft palate, can run in families. In families where the cause is genetic, there is often a 50% chance of another child being born with it. However, in families where there is no history of clefts, the chance are very small of another child being born with a cleft.
What kinds of problems could my child have?
In addition to the physical characteristics common to clefts, your child may have the following problems:
- dental development - teeth in the area of the cleft may be missing or improperly positioned. This may affect your child's appearance and chewing ability.
- speech difficulties - cleft lip does not usually result in speech problems; however, often children with cleft palates benefit greatly from early speech therapy.
- frequent colds, sore throats, fluid in the ears and tonsil and adenoid problems.
Will my child need surgery?
Depending on the severity of the cleft lip or palate, your child may have some or all of the following surgeries:
- lip closure - to bring the separated lip muscle parts into place
- lip adhesion and definitive lip repair to improve lip and nose contour
- cleft palate surgery to close the hard palate, to maximize jaw growth and development, and to produce normal speech
- palatal surgery to increase the soft palate's length and to close the palatal cleft space
- soft palate - surgery to close and/or to improve muscle control
- surgery on adenoids and tonsils
- ear tubes-often done in combination with another surgery to decrease fluids in the ears and subsequent ear infections
New advances in procedures to correct cleft lip and palate occur all the time. 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.
Wide Smiles, Inc.
P.O. Box 5153
Stockton, CA 95205-0153
(209) 942-2812
E-mail: widesmiles@aol.com
Website: http://www.widesmiles.org
Excellent resource! Wide Smiles' website includes everything a parent wants to know including cleft-related documents, stories, photos, networking, plus a very active internet discussion group.
The Smile Train
Cleft Information Public Library
This excellent new resource has instant access to full transcripts of numerous articles and studies related to every major cleft issue. Great resource for both patients and professionals.
The Cleft Palate Foundation (CPF)
104 South Estes Drive, Suite 204
Chapel Hill, NC 27514
(800) 24-CLEFT
Email: cleftline@aol.com
Website: http://www.cleftline.org
Information on clefts, as well as outstanding resource of educational information. The toll-free Cleft line is a 24-hour help line.
Cleft Advocate
This website, under the direction of Deb Oliver, focuses on a number of financial issues of cleft repair and treatment. She includes a number of example letters to assist parents in appealing insurance decisions, as well as to assist with state Medicaid issues.
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.
MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
Website: http://www.netnet.net/mums/
This organization helps you get in touch with parents
in your area whose children also have clefts.
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 present by facial differences of their children.
Lipman Productions - Publications for Families of Cleft-Affected Children
2431 Butterfly Palm Drive
Naples, FL 34119
Don't Despair Cleft Repair is a book authored by Karen Lipman from her perspective of being the mom of a child born with a cleft. The book may be purchased for $25.00, plus $1.00 for shipping.
My Puzzling Smile is a 16-page booklet written by Karen and her son. It is an excellent tool to use in the classroom to teach children about various cleft issues. This book may be purchased from Lipman Productions for $3.00, plus $1.00 for shipping.
The Cleft Palate Story. Written by Samuel Berkowitz, DDS, MS, FICD. Published by Quintessence Publishing Co., 1-800-621-0387.
Surgical procedures performed from birth to adolescence are treated in depth; helps parents to understand options and what to expect; appendices on financial assistance, agencies, support groups, and a glossary of terms.
Foundation for Faces of Children
258 Harvard St. Suite 367
Brookline, MA 02446
(617) 355-8299
e-mail: info@facesofchildren.org
website:www.facesofchildren.org
New England parent support network for awareness and education. This site is for parents who are just learning that their child has a craniofacial condition. Award-winning FREE video for new parents of a child with a cleft (Understanding Cleft Lip & Palate, A Guide for New Parents). English and Spanish versions available.
Florida Cleft Palate-Craniofacial Association
Post Office Box 100424
Gainesville, FL 32610-0424
(352) 846-0801 OR (352) 392-1635 FAX: 352-846-1539
Toll Free:(800) 726-2029
e-mail: williams@dental.ufl.edu
website: www.floridacleft.org
This statewide program can assist Florida hospitals and families in obtaining specially designed bottles and nipples for feeding, provide them with informational materials, and incorporate them as part of the family network. It can also provide a list of treatment centers closest to their community.
Michigan Cleft Network
4468 Gertrude Street
Dearborn, MI 48125
Telephone: (313) 279-0365 Toll Free (888) MI-CLEFT
Website: www.MiCleft.org
Local and state programs, craniofacial organizations, feeding and medical supplies, family assistance, surgical team listing, and much more for Michigan families. |
