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Facts about Cleft Lip and Cleft Palate

Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly. Together, these birth defects commonly are called “orofacial clefts”. These birth defects happen early during pregnancy. A baby can have a cleft lip, a cleft palate, or both.

Children with a cleft lip with or without a cleft palate or a cleft palate alone often have problems with feeding and talking. They also might have ear infections, hearing loss, and problems with their teeth.

The Centers for Disease Control and Prevention (CDC) recently estimated that each year 2,651 babies in the United States are born with a cleft palate and 4,437 babies are born with a cleft lip with or without a cleft palate.1 Cleft lip is more common than cleft palate. Isolated orofacial clefts, or clefts that occur with no other birth defects, are one of the most common birth defects in the United States. About 70% of all orofacial clefts are isolated clefts.


Cleft Lip

The lip forms between the fourth and seventh weeks of pregnancy. A cleft lip happens if the tissue that makes up the lip does not join completely before birth. This results in an opening in the upper lip. The opening in the lip can be a small slit or it can be a large opening that goes through the lip into the nose. A cleft lip can be on one or both sides of the lip or in the middle of the lip, which occurs very rarely. Children with a cleft lip also can have a cleft palate.


Cleft Palate

The roof of the mouth is called the "palate." It is formed between the sixth and ninth weeks of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not join correctly. Among some babies, both the front and back parts of the palate are open. Among other babies, only part of the palate is open.

Causes and Risk Factors

Just like the many families affected by birth defects, CDC wants to find out what causes them. Understanding the risk factors that can increase the chance of having a baby with a birth defect will help us learn more about the causes. CDC currently is working on one of the largest studies in the United States―the National Birth Defects Prevention Study―to understand the causes of and risk factors for birth defects. This study is looking at many possible risk factors for birth defects, such as orofacial clefts.

The causes of orofacial clefts among most infants are unknown. Some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as exposures in the environment, maternal diet, and medication use.

Did You Know?

Women can take steps before and during pregnancy to reduce the risk of having a baby born with birth defects. Such steps include taking a daily multivitamin with folic acid (400 micrograms), not smoking, and not drinking alcohol during pregnancy.

Learn more about how to prevent birth defects »

Recently, CDC reported on important findings about some factors that increase the risk of orofacial clefts:

  • Smoking―Women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke.2,3
  • Diabetes―Women with diabetes diagnosed before pregnancy have been shown to be an increased risk of having a child with a cleft lip with or without cleft palate.4

CDC continues to study birth defects, such as orofacial clefts and how to prevent them. If you smoke or have diabetes, and you are pregnant or thinking about becoming pregnant, talk with your doctor about ways to increase your chances of having a healthy baby.

Diagnosis

Orofacial clefts sometimes can be diagnosed during pregnancy, usually by a routine ultrasound. Most often, orofacial clefts are diagnosed after the baby is born. However, sometimes minor clefts (e.g., submucous cleft palate and bifid uvula) might not be diagnosed until later in life.

Treatments

Services and treatment for children with orofacial clefts can vary depending on the severity of the cleft; the presence of associated syndromes or other birth defects, or both; and the child’s age and needs. Surgery to repair a cleft lip usually occurs in the first few months of life and is recommended within the first 12 months of life. Surgery to repair a cleft palate is recommended within the first 18 months of life.5 Many children will need additional surgeries as they get older. Although surgical repair can improve the look and appearance of a child’s face, it also may improve breathing, hearing, speech, and language. Children born with orofacial clefts also might need different types of treatments and services, such as special dental or orthodontic care or speech therapy.6

Because children and individuals with orofacial clefts often require a variety of services that need to be provided in a coordinated manner, services and treatment by cleft teams is recommended. Cleft teams provide a coordinated, interdisciplinary team approach to care for children with orofacial clefts. These teams usually consist of experienced and qualified physicians and health care providers from different specialties. Cleft teams and centers are located throughout the United States and other countries. Resources are available to help in choosing a cleft team. With treatment, most children with orofacial clefts do well and lead a healthy life.

Resources for Parents

Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.

American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is an international nonprofit medical society of health care professionals who treat and/or perform research on birth defects of the head and face.

AmeriFace(previously AboutFace USA)
AmeriFace is an organization that provides educational and emotional support to persons born with craniofacial anomalies or acquired facial differences and their families. Ameriface website also has state insurance and Medicaid information for craniofacial conditions.

Children’s Craniofacial Association
Children's Craniofacial Association is a national nonprofit organization dedicated to improving the quality of life for people with facial differences and their families.

Cleft Advocate
Cleft Advocate is an organization whose mission is to educate and inspire families whose lives are touched by cleft lip and/or palate or other craniofacial anomalies. The Cleft Advocate website also lists the states with mandated health benefits for clefts.

Cleft Palate Foundation
The Cleft Palate Foundation (CPF) is a nonprofit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects through activities like education, making referrals to craniofacial centers, and funding research. The CPF also has a fact sheet of financial assistance and federal and state resources for cleft lip/palate and information about dental and orthodontic coverage for children with clefts.

FACES-The National Craniofacial Association
The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease.

Families USA
Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.

Family Voices
Family Voices is a national organization that aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

March of Dimes
March of Dimes is a national nonprofit organization that provides education and services to help mothers have full-term pregnancies, and researches the problems that threaten the health of babies.

MedlinePlus - MedlinePlus is a website maintained by the U.S. National Library of Medicine, which provides consumer health information for patients, families, and health care providers.

National Institute of Dental and Craniofacial Research
Part of the National Institutes of Health, the National Institute of Dental and Craniofacial works to improve oral, dental, and craniofacial health through research, research training, and the dissemination of health information.

National Foundation for Facial Reconstruction
The National Foundation for Facial Reconstruction (NFFR) supports the medical and psychosocial treatment of those with facial deformities. They also provide resources for families, such as guides for parents of children with facial differences. The parent resources have a list of state and federal health insurance programs and financial services for parents. These resources are also available in Spanish.

Operation Smile
Operation Smile is an international children's medical charity that provides reconstructive surgery for children born with facial deformities such as cleft lip and cleft palate.

Smile Train
Smile Train is an international charity focused specifically on treating cleft lip and cleft palate. It provides free cleft surgery to children in developing countries, trains doctors and medical professionals in over 80 countries, and provides comprehensive rehabilitative care to children including speech therapy, general dentistry and orthodontics.

Tiny Wide Smiles
Tiny Wide Smiles is a doll clinic created by a parent (read her special story here). Through her book and custom dolls, she helps families deal with the self-esteem and social issues associated with facial differences, spreading awareness, and bringing comfort to people touched by cleft lip and/or palate.


World Craniofacial Foundation
The World Craniofacial Foundation is a nonprofit organization dedicated to giving help, hope and healing to children and adults who experience abnormalities of the head and/or face by providing support and access to life-changing medical procedures. The World Craniofacial Association has a frequently asked questions document about costs, insurance coverage, and donated services for craniofacial abnormalities.

References

  1. Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, et al; for the National Birth Defects Prevention Network. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006. Birth Defects Res A Clin Mol Teratol. 2010;88(12):1008-16.
  2. Little J, Cardy A, Munger RG. Tobacco smoking and oral clefts: a meta-analysis. Bull World Health Organ. 2004 Mar;82(3):213-8.
  3. Honein MA, Rasmussen SA, Reefhuis J, Romitti P, Lammer EJ, Sun L, et al. Maternal smoking, environmental tobacco smoke, and the risk of oral clefts. Epidemiology 2007;18(2):226–33.
  4. Correa A, Gilboa SM, Besser LM, et al. Diabetes mellitus and birth defects. Am J Obstet Gynecol 2008;199(3): 237.e1-9.
  5. American Cleft Palate-Craniofacial Association. Parameters for evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. Revised edition, Nov 2009. Chapel Hill, NC. P. 1-34.
  6. Yazdy MM, Autry AR, Honein MA, Frias JL. Use of special education services by children with orofacial clefts. Birth Defects Res A Clin Mol Teratol. 2008;82:147-54.

A gene is a part of DNA that carries the information needed to make a protein. People inherit one copy of each gene from their mother and one copy from their father. The genes that a person inherits from his or her parents can determine many things. For example, genes affect what a person will look like and whether the person might have certain diseases.
 

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