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.

• www.newmouth.com/pediatric-dentristry/oral-conditions-diseases/cleft-lip-and-palate

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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 Here for a 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

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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

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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 craniofacial teams located in the United States 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.

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FACES: The National Craniofacial Association

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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.

 

Office of Rare Diseases

The Genetic and Rare Diseases Information Center

Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/search?keyword=cleft%20palate

 

US National Library of Medicine

Your guide to understanding genetic conditions

Website: ghr.nlm.nih.gov/condition/ankyloblepharon-ectodermal-defects-cleft-lip-palate-syndrome

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The Smile Train

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.
Website: www.smiletrain.org/cleft-resources/best-practice-resources

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The Cleft Palate Foundation (CPF)

Information on clefts, as well as outstanding resource of educational information. The toll-free Cleft line has 24-hour help. 
Phone: (800) 24-CLEFT or (800) 242-5338
Website: cleftline.org
 

CPF College Scholarships

The Cleft Palate Foundation is pleased to announce the establishment of the CPF Scholarships for Students with Craniofacial Anomalies. Selection for the award will be based on past academic success, evidence of leadership skills or school/community involvement and strong indications of future academic success. An application and additional information is available on the CPF website at cleftline.org/family-resources/college-scholarships.

Cleft Advocate

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.
Phone: (888) 486-1209
Website: www.cleftadvocate.org

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National Health Law Program

Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Website: healthlaw.org

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Foundation for Faces of Children

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.

Phone: (781) 545-5086

Website: facesofchildren.org

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Florida Cleft Palate-Craniofacial Association

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.

Phone: (800) 726-2029

Website: www.floridacleft.org

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Parents And Clefts

This site addresses practical and emotional issues for parents of kids born with cleft lip and palate. It will eventually become a book authored by Amy Mendillo, parent of a child born with cleft lip and palate.

Website: www.parentsandclefts.com

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Additional Resources