|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
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 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 or (800) 242-5338
Email: info@cleftline.org
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
P O Box 751112
Las Vegas, NV 89136
(888)486-1209
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 6006
Brandon, FL 33508
Toll Free:(800) 726-2029
e-mail: info@floridacleft.org
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.
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Last modified on: Monday, April 27, 2009 02:45 PM
