Cleft Lip and Palate
What is Cleft Lip and Palate?
Cleft lip (split of the upper lip) and cleft palate (split of the roof of the mouth) are the most common types of congenital facial difference.
A unilateral cleft lip occurs on one side of the upper lip. A bilateral cleft lip occurs on both sides of the upper lip. In its most severe form, the cleft may extend through the base of the nose.
Cleft palate is an opening in the roof of the mouth. There are several types which vary in severity. Incomplete cleft palate involves only the v-shaped portion of the back of the throat (uvula) and the muscular soft palate (velum). Complete cleft palate extends the entire length of the palate. Cleft palates can be unilateral or bilateral.
It is possible for a child to have a cleft lip, cleft palate, or both cleft lip and palate.
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 2005 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 64 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.
The Smile Train
Cleft Information Public Library website www.smiletrain.org/medical/medical-research-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)
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514
(800) 24-CLEFT or (800) 242-5338
Information on clefts, as well as outstanding resource of educational information. The toll-free Cleft line is a 24-hour help line.
P O Box 751112
Las Vegas, NV 89136
This website focuses on a number of financial issues of cleft repair and treatment. It 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
1444 I Street NW, Suite 1105
Washington, DC 20005
Provides extensive information on health care law affecting families with children who have special health care needs.
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
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
For more information or to order: www.cleftbooks.biz
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 $15.00.
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 $5.00.
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
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 DVD for new parents of a child with a cleft (Understanding Cleft Lip & Palate, A Guide for New Parents). English and Spanish versions available. You will also want to see the online brochure on dental care for children with cleft lip and palate, including a timeline that shows at what age a child with a cleft should receive dental and surgical treatments.
Florida Cleft Palate-Craniofacial Association
Post Office Box 6006
Brandon, FL 33508
Toll Free:(800) 726-2029
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) 590-6000
Toll Free (888) MI-CLEFT
Local and state programs, craniofacial organizations, feeding and medical supplies, family assistance, surgical team listing, and much more for Michigan families. Be sure to visit the new online community at: www.micleft.com/discussion.htm