Cleft lip and palate

Definition

A cleft lip and/or palate is a birth defect (congenital) of the upper part of the mouth. A cleft lip creates an opening in the upper lip between the mouth and nose and a cleft palate occurs when the roof of the mouth has not joined completely.

Description

Cleft means split or separated. During the first months of pregnancy, separate areas of the face—such as bony and muscular parts, mouth, and throat, develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary. During the fifth through ninth weeks of pregnancy genetic and environmental factors are most likely to affect lip and palate development. Cleft palate occurs when the right and left segments of the palate fail to join properly. The back of the palate (toward the throat) is called the soft palate, and the front section (toward the mouth opening) is known as the hard palate. A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate). In some cases, an infant with a cleft palate may also have a small lower jaw and have difficulty breathing. This condition is called Pierre Robin sequence.

Cleft lip occurs when the lip elements fail to come together during fetal development, thus creating an opening in the upper lip between the mouth and nose. The lip looks split. A cleft lip may be complete, meaning that there is complete separation in one or both sides of the lip extending up and into the nose, or it may be incomplete, in which case there is only a notch in the fleshy portion of the lip. The incomplete cleft lip results in less facial distortion because the connected parts of muscle and tissue have a stabilizing effect. In a complete cleft lip, the muscles pull away from the center of the face, resulting in distortion of the nose and mouth. A cleft on one side is called a unilateral cleft. If a cleft occurs on both sides, it is called a bilateral cleft.

Demographics

Over 5,000 infants are born each year in the United States with a cleft lip or palate (about one in every 700 births). Cleft lip without cleft palate is the third most common congenital malformation among newborns in the United States and is estimated to occur roughly twice as often in males than in females. Cleft palate without cleft lip is fifth most common, and it affects roughly twice as many girls as boys. Clefts may affect the left or right side of the mouth only (unilateral) or both sides (bilateral). Left-side clefts represent 70 percent of all unilateral clefts. In the United States, clefting seems to be at least in part related to ethnicity, occurring most often among Asians, Latinos, and Native Americans (one in 500), next most often among persons of European ethnicity (one in 700), and least often among persons of African ethnicity (one in 1,000).

Causes and symptoms

The causes of clefts are as of 2004 still poorly understood. Most scientists believe that clefting occurs as a result of a combination of genetic and environmental factors. In the United States and western Europe, researchers report that a family history of facial clefts is present in approximately 40 percent of all cases. The likelihood of a baby being born with a facial cleft increases if a first-degree relative (mother, father, or sibling) has a cleft. Mothers who abuse alcohol and drugs, lack vitamins (especially folic acid ) during the first weeks of pregnancy, or have diabetes are more likely to have a child with facial clefts.

Clefts may occur alone or with other abnormalities that may be hidden or obvious. Up to 13 percent of infants with cleft lip or palate have other birth defects. Some cases involve genetic syndromes that may result in specific problems for the infant and may have a high risk of affecting others in the family. For this reason, newborns with clefts should be thoroughly examined by a specialized physician soon after birth.

When to call the doctor

Families with a history of cleft lip or palate or any other syndrome or condition associated with clefting should discuss the chances of recurrence with a genetic counselor.

Diagnosis

Because clefting causes specific physical manifestations, it is easy to diagnose. Although some types of clefts can be detected during pregnancy by an ultrasound test, many are not discovered until birth.

Treatment

A cleft lip and/or palate can be repaired with corrective surgery, performed in a hospital under general anesthesia. Generally, within the first few days following birth of an infant with a facial cleft, a team is assembled to prepare a plan for treatment of the cleft. The treatment team usually includes representatives from several medical or psychological specialties, including pediatrics, plastic surgery, otolaryngology, orthodontia, prosthodontics, oral surgery, speech and language pathology, audiology, nursing, and psychology. It is common for one team member to coordinate service and communication between the team members and the family.

Surgical repair of a cleft lip is carried out at about three to four months of age. The whole emphasis in repairing the lip is on the muscle repair in order to mold the distorted front central section of the upper gum containing the four upper front teeth (premaxilla) back into its proper position. Cleft lip often requires only one reconstructive surgery, especially if the cleft is unilateral. The surgeon makes an incision on each side of the cleft from the lip to the nostril, drawing the two sides of the cleft together and suturing them together. Bilateral cleft lips are usually repaired in two surgeries, about a month apart. The first surgery is performed when a baby is between six and 10 weeks old and usually requires a one-night stay in the hospital.

Cleft palate can require several surgical procedures during the course of a child's first 18 years. The first surgery to repair the palate usually occurs when the infant is between six and 12 months old. It usually involves palatal lengthening and drawing tissue from either side of the mouth to rebuild the palate. The procedure usually requires two or three nights in the hospital, the first night in the intensive care unit. The purpose of this surgery is to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help the proper development of the child's teeth and facial bones. In addition, the functional palate helps the child's speech development and feeding abilities. In both types of surgery, the necessity for more operations depends on the skill of the surgeon as well as the severity of the cleft, its shape, and the thickness of available tissue that can be used to create the palate. About 20 percent of children with a cleft palate require further surgical procedures to help improve their speech. Additional surgeries may also improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and realign the jaw.

Nutritional concerns

Infants with cleft lip or cleft soft palate generally have few feeding problems. However, when the cleft involves the hard palate, the infant is usually not able to suck efficiently. For these infants, caregivers must experiment with various feeding techniques, such as special nipples or alternate feeding positions. The infant with a cleft should be held in a nearly sitting position during feeding to prevent the breast or formula milk from flowing back into the nose. In addition, the infant should be burped frequently, approximately every three or four minutes. The sucking reflex is strong in all infants and should be encouraged in infants with facial clefts even if the sucking is inefficient, since the reflex seems to help the later development of speech. It is important to keep the cleft clean and not to allow formula, mucus, or other matter to collect in the cleft.

Prognosis

Both cleft lip and cleft palate are treatable birth defects. Most children born with either or both of these conditions undergo reconstructive surgery while they are still infants to correct the defect and significantly improve facial appearance. With advances in surgical techniques and with more complete repair of facial clefts, about 80 percent of affected children have normal speech development by the time they enter school. Continuation of speech therapy results in continuous improvement for most common speech problems.

Prevention

While little is known about how to prevent clefts, researchers from the California Birth Defects Monitoring Program found that women considering pregnancy may be able to reduce the risk of facial clefts (and possibly other birth defects) in their offspring by taking a multivitamin containing folic acid for one month prior to becoming pregnant. Other studies have shown that fetuses with certain predisposing genes may be at increased risk for cleft palate if their mothers smoke. Because some types of medications (for example some drugs used to treat epilepsy) have been linked to increased risk of clefts, women who take medications for chronic illnesses should check with their doctors before they become pregnant.

Parental concerns

Parents of a newborn baby with a cleft lip or palate are often confused and afraid of the impact the defect will have on their child's life. These feelings can be alleviated by learning about the cleft and treatment options. They also must communicate what they are learning about clefts to family, siblings, and friends. It is important for people who come into contact with the child to realize that a cleft is not a wound, although it may give the impression that it is tender or sore. Parents can help others understand that the cleft does not hurt and that it will be repaired. To ensure normal psychological and speech development, parents should interact with their infant as they would with any newborn in the family and should encourage others to do the same.

KEY TERMS

Bilateral cleft lip —A cleft that occurs on both sides of the lip.

Cleft —An elongated opening or slit in an organ.

Complete cleft —A cleft that extends through the entire affected mouth structure.

Congenital —Present at birth.

Palatal lengthening (palatal pushback) —A surgical procedure in which tissue from the front part of the mouth is moved back to lengthen it.

Palate —The roof of the mouth.

Premaxilla —The front central section of the upper gum, containing the four upper front teeth.

Unilateral cleft —A cleft that occurs on only the right or left side of the lip.

As the child with a cleft grows and develops, he or she will certainly experience many good and bad reactions from adults and children. Other children may tease the child or use the term "harelip." It may be helpful for parents of a child with a facial cleft to meet with his classmates and teachers to explain the history of the term harelip. Although a facial cleft was once referred to as a harelip to reflect its similarity to the mouth of a rabbit, the term is considered insulting today. Educating adults and children about cleft lip and palate is the best way to relieve others' anxiety about the defect and lessen any negative psychological effects that bad reactions might have on the child.

See also Language development.

Resources

BOOKS

Bzoch, Kenneth R. Communicative Disorders Related to Cleft and Lip Palate. Austin, TX: PRO-ED Inc., 2004.

Golding-Kushner, Karen J. Therapy Techniques for Cleft Palate Speech and Related Disorders. San Diego, CA: Singular Publishing Group Inc., 2001.

Gruman-Trinkner, Carrie, and Blaise Winter. Your Cleft-Affected Child: The Complete Book of Information, Resources, and Hope. Berkeley, CA: Publishers Group West, 2001.

Wysznski, Diego I. Cleft Lip and Palate: From Origin to Treatment. Oxford, UK: Oxford University Press, 2002.

PERIODICALS

Caniklioglu, M. C. "Use of a nickel titanium palatal expander in cleft-palate cases." Journal of Clinical Orthodontics 38, no. 7 (July 2004): 374–77.

Chapman, K. L. "Is presurgery and early postsurgery performance related to speech and language outcomes at 3 years of age for children with cleft palate?" Clinical Linguistics and Phonetics 18, no. 4–5 (June-August 2004): 235–57.

Hermann, N. V., et al. "Early craniofacial morphology and growth in children with bilateral complete cleft lip and palate." Cleft Palate and Craniofacial Journal 41, no. 4 (July 2004): 104–05.

Mulliken, J. B. "The changing faces of children with cleft lip and palate." New England Journal of Medicine 351, no. 8 (August 2004): 745–47.

Smith, A. S., et al. "Prenatal diagnosis of cleft lip and cleft palate using MRI." American Journal of Roentgenology 183, no. 1 (July 2004): 229–35.

Van Lierde, K. M., et al. "Vocal quality characteristics in children with cleft palate: a multiparameter approach." Journal of Voice 18, no. 3 (September 2004): 354–62.

Whitehill, T. L., and C. H. Chau. "Single-word intelligibility in speakers with repaired cleft palate." Clinical Linguistics and Phonetics 18, no. 4–5 (June-August 2004): 341–55.

ORGANIZATIONS

About Face USA. PO Box 969, Batavia, IL 60510–0969. Web site: <www.aboutfaceusa.org/default.htm>.

American Cleft Palate: Craniofacial Association (ACPCA)/Cleft Palate Foundation (CPF). 1504 East Franklin Street, Suite 102, Chapel Hill, NC 27514–2820. Web site: <www.cleftline.org>.

American Speech-Language-Hearing Association. 10801 Rockville Pike, Rockville, MD 20852. Web site: <www.asha.org>.

Children's Craniofacial Association (CCA). 13140 Coit Road, Suite 307, Dallas, Texas 75240. Web site: <www.ccakids.org/default.htm>.

WEB SITES

"Cleft Lip and Palate Resource." Wide Smiles. Available online at <www.widesmiles.org> (accessed November 16, 2004).

March of Dimes Homepage. Available online at <www.modimes.org/> (accessed November 15, 2004).

Monique Laberge, Ph.D.

Cleft Lip and Palate

Definition

A cleft is a birth defect that occurs when the tissues of the lip and/or palate of the fetus do not fuse very early in pregnancy. A cleft lip, sometimes referred to as a harelip, is an opening in the upper lip that can extend into the base of the nostril. A cleft palate is an opening in the roof of the mouth.

Description

Babies born with cleft lips will have an opening involving the upper lip. The length of the opening ranges from a small notch, to a cleft that extends into the base of the nostril. Cleft lips may involve one or both sides of the lip.

Babies born with cleft palates have openings in the palate, which is the roof of the mouth. The size and position of the opening varies. The cleft may be only in the hard palate, the bony portion of the roof of the mouth, opening into the floor of the nose. It may be only in the soft palate, the soft portion of the roof of the mouth. The cleft palate may involve both the hard and soft palate and may occur on both sides of the center of the palate.

Babies may have cleft lips with or without cleft palates. Cleft palates may also occur without cleft lips.

The incidence of cleft lip and palate not associated with a syndrome is one in 700 newborns. Native Americans have an incidence of 3.6 in 1,000 newborns. The incidence among Japanese newborns is 2.1 in 1,000. The incidence among whites is one in 1,000 newborns. African Americans have an incidence of 0.3 in 1,000 newborns.

Causes and symptoms

Cleft lips and palates not associated with a syndrome are caused by a combination of genetic and environmental factors. Inheritance caused by such a combination is called multifactorial. The embryo inherits genes that increase the risk for cleft lip and/or palate. When an embryo with such genes is exposed to certain environmental factors the embryo develops a cleft.

The risk of a baby being born with a cleft lip or palate increases with the number of affected relatives and the number of relatives that have more severe clefts.

Environmental factors that increase the risk of cleft lip and palate include cigarette and alcohol use during pregnancy. Some drugs, such as phenytoin, sodium valproate, and methotrexate, also increase the incidence of clefting. The pregnant mother's nutrition may affect the incidence of clefting as well.

Babies born with a cleft lip will be seen to have an elongated opening in the upper lip. The size of this opening may range from a small notch in the upper lip to an opening that extends into the base of the nostril. The cleft lip may be below the right or left nostril or below both nostrils.

Babies born with a cleft palate will be seen to have an opening into the roof of the mouth. The size and position of the cleft varies and it may involve only the hard palate, or only the soft palate and may occur on both sides of the center of the palate.

In some cases the cleft palate will be covered with the normal lining of the mouth and can only be felt by the examiner.

Babies with cleft lips and palates have feeding difficulties, which are more severe in babies with cleft palates. The difficulty in feeding is due to the baby being unable to achieve complete suction. In the case of clefts of the hard palate, liquids enter the nose from the mouth through the opening in the hard palate.

A cleft palate also affects a child's speech, since the palate is necessary for speech formation. The child's speech pattern may still be affected despite surgical repair.

Ear infections are more common in babies born with cleft palates. The infections occur because the muscles of the palate do not open the Eustachian tubes that drain the middle ear. This allows fluid to collect and increases the risk of infection and hearing loss.

Teeth may also erupt misaligned.

Diagnosis

Cleft lip and palate can be diagnosed before birth by ultrasound. Magnetic resonance imaging (MRI) offers more accuracy for detecting cleft lip and palate, as it is a more detailed imaging method. It is particularly helpful in showing soft palate defects. In 2004, researchers reported discovery of a gene test for isolated cleft lip and cleft palate to help predict if parents who have one child with the isolated form of cleft lip or palate were likely to have a second child with the same defect. After birth, cleft lip and palate are diagnosed by physical exam.

Treatment

If cleft lip and/or palate are diagnosed by ultrasound before birth, further testing may be required to diagnose associated abnormalities if present. Referral to a cleft team is essential. A cleft team consists of specialists in the management of babies with clefts and includes surgeons as well as nurses and speech therapists. Members of the team inform the parents of all aspects of management. Feeding methods are also discussed, since feeding is the first problem that must be dealt with. It may be possible to breastfeed a baby born with only a cleft lip, but babies born with cleft palates usually have more problems with feeding and frequently require special bottles and teats. A palatal obturator is a device that fits into the roof of the mouth, thus blocking the cleft opening and allowing easier suckling.

Surgery to repair cleft lips is sometimes performed after orthodontic treatment to narrow the gap in the upper lip. The orthodontic treatment can involve acrylic splints with or without screws or may involve the use of adhesive tape placed across the gap in the lip. The orthodontic treatment for cleft lip should be started within the first three weeks of life and continue until the cleft lip is repaired.

The timing of surgical cleft lip repair depends on the judgment of the surgeon who will perform the operation. The procedure is usually performed between one and three months of age. The goals of the operation are to close the gap in the upper lip, place scars in the natural skin curves and to repair muscle so that the lip appears normal during movement. The closure is done in the three layers (skin, muscle, and mucosa) that line the inside of the lip. At the time of the procedure, if the nose is shaped abnormally due to the cleft lip, it is also corrected. Sometimes further surgery may be needed on the lip and/or nose to refine the result.

The goals of the surgeon repairing a cleft palate are normal speech, normal facial growth, and hearing for the affected infant. The repair of the cleft palate is usually performed between three and 18 months of age. The timing may extend beyond this and varies with the type of cleft palate and center where the procedure is being performed. Depending of the type of cleft palate, more than one operation may be needed to close the cleft and improve speech.

Nonsurgical treatment of a cleft palate is available for patients who are at high risk for surgery and consists of a prosthetic appliance worn to block the opening in the palate.

Babies born with cleft palates are vulnerable to ear infections. Their Eustachian tubes do not effectively drain fluid from the middle ear so fluid accumulates and infection sets in. This may lead to hearing loss. These children require drainage tubes to be inserted to prevent fluid accumulation.

Babies born with clefts usually require orthodontic treatment between 13 and 18 years of age. They also require speech therapy.

Prognosis

Babies born with cleft lip and palate have a good prognosis, and approximately 80% will develop normal speech. There is no known means of preventing clefting. Good prenatal care is essential and avoiding harmful substances appear to reduce the risk.

Resources

PERIODICALS

Bender, Patricia L. "Genetics of Cleft Lip and Palate." Journal of Pediatric Nursing 15 (August 2000): 242-249.

Christensen, Karr. "The 20th Century Danish Facial Cleft Population—Epidemiological and Genetic—Epidemiolical Studies." Cleft Palate—Craniofacial Journal 36 (March 1999): 96-104.

Chung, Kevin C. "Maternal Cigarette Smoking during Pregnancy and the Risk of Having a Child with Cleft Lip/Palate." Plastic and Reconstructive Surgery 105 (February 2000): 458-491.

Cockell, Anna. "Prenatal Diagnosis and Management of Orofacial Clefts." Prenatal Diagnosis 20 (February 2000): 149-151.

"MRI More Accurate for Detecting Prenatal Cleft Lip and Palate than Sonography." Medical Devices & Surgical Technology Week July 25, 2004: 160.

"Researchers Report New Gene Test for Isolated Cleft Lip and Palate." Science Letter September 28, 2004: 518.

Rohrich, Rod J. "Optimal Timing of Cleft Palate Closure." Plastic and Reconstructive Surgery 106 (August): 413-421.

ORGANIZATIONS

Cleft Palate Foundation. (800) 24-CLEFT. 〈http://www.cleftline.org〉.

cleft lip and palate are congenital deformities of variable severity. The face begins to develop around the fourth week of life in the womb, from five different parts of the developing fetal tissue — a central one and two on each side. These embryonic cellular components normally migrate and fuse to give rise to the nose, the sides and centre of the upper lip, and the palate and the lower jaw. Any failure of fusion of these parts can result in a cleft. The severity may vary from a barely detectable groove or ridge with a gap in the underlying muscles, to a complete cleft on each side of the lip associated with clefts extending back through the gums and the palate. Although genetic factors are implicated, the causes of such deformities are considered to be multi-factorial. Cleft lip and palate (CL/P) and cleft palate alone (CP) are different entities with varying incidence, epidemiology, and genetics.

Clefts of the lip, with or without clefts of the palate, occur in 1 in 750 live births, as compared with 1 in 2000 for clefts of the palate alone. CL/P is commoner in boys and CP alone is commoner in girls. There are racial variations in incidence of CL/P, with a decreasing order of frequency in Orientals, Europeans, and Africans, but there is no heterogeneity in the incidence of CP.

The problems associated with clefts of the lip and palate are both aesthetic and functional.

Aesthetic problems — those related to appearance — are mainly in patients with clefts of the lip. These may be on one side of the central part or on both sides. Clefts of the lip are also associated with deformity of the nose and asymmetry of the underlying facial skeleton which contribute to the problems of abnormal facial appearance.

Functional problems are minor in unrepaired clefts of the lip except in the infant, when there may be difficulty in sucking due to inability to achieve an efficient lip seal, or later, when clarity of speech or whistling may be affected. Unrepaired clefts of the palate, especially the soft palate, cause significant functional problems associated with speech and swallowing. Eustachian tube malfunction in CP patients may result in middle ear infections and hearing loss.

The earliest repairs recorded in history were in China circa 390 ad; in Europe the first report was of surgical repair by a French dentist, le Monier, in 1764. Advances in surgical techniques, and especially anaesthesia, now allow anatomical correction with great precision in restoration of form and function. Traditional repair of the cleft lip is recommended at around the age of 3 months or at a weight of 10 lbs, and of the cleft palate at about 18 months — but various protocols and techniques exist. Current techniques are very successful but there is considerable controversy regarding the effects of surgery and possible adverse influences on facial growth and function.

Arup K. Ray

cleft palate incomplete fusion of bones of the palate. The cleft may be confined to the soft palate at the back of the mouth; it may include the hard palate, or roof of the mouth; or it may extend through the gum and lip, producing a gap in the teeth and a cleft lip, which is cosmetically difficult to repair but is not disabling. The condition appears to be hereditary but not under the control of a single pair of genes. A cleft palate causes separation between the oral and nasal cavities. An infant cannot develop proper suction for drinking, and there is the danger of milk entering the nasal cavity and being aspirated into the lungs. Formula must be carefully placed at the back of the tongue for normal swallowing to take place. Ear infection may result from food or fluid passing from the nasal cavity to the middle ear by way of the Eustachian tubes. Proper speech articulation is difficult unless the cleft is surgically closed, with a prosthesis. The proper time for such an operation is in dispute; some authorities prefer early closure, before the cleft interferes with development of normal speech habits, while others prefer to wait for several years until facial growth has been completed. Dental, orthodontic, psychiatric, and speech therapy may be required.

Cleft Palate

Mixed Feelings

What Is a Cleft Palate?

Why Are Babies Born with Cleft Palates and Cleft Lips?

What Happens to Children with Cleft Palate and Cleft Lip?

Resources

A cleft palate is a gap or split in the roof of the mouth (the palate). It occurs when the palate of a fetus does not develop properly during the first months of pregnancy.

KEYWORDS

for searching the Internet and other reference sources

Craniofacial syndromes

Otolaryngology

Reconstructive surgery

Mixed Feelings

Tonya and Phil were excited to hear their newborn son’s first cry, but they were shocked when they saw him for the first time; baby Philip’s upper lip was split up the middle. The doctor told them that Philip had a cleft palate as well as a cleft lip, and that both are fairly common birth defects. The doctor reassured Philip’s parents that Philip was otherwise a very healthy baby—the cleft lip and palate would cause Philip some problems, but none that could not be overcome. A plastic surgeon would repair Philip’s lip and palate, and a team of specialists would work on problems with his teeth, ears, and speech.

What Is a Cleft Palate?

Cleft means gap or split, and the palate is the roof of the mouth. A cleft palate occurs when the roof of the mouth in a fetus* does not develop properly during pregnancy, leaving a hole between the nose and the mouth.

* fetus

(FEE-tus) is the term for an unborn human offspring during the period after it is an embryo, from 9 weeks after fertilization, until childbirth.

The palate extends from the top teeth to the uvula (YOOV-u-la), which is the little piece of tissue that hangs in the back of the throat. There is a bony hard palate (which can be felt just behind the top teeth) and a muscular soft palate (just behind the hard palate). A fully formed palate is necessary to close off the nose and throat from the mouth. It keeps food from going up the nose, and it pushes food to the back of the throat when a person is swallowing. The palate also is important for speaking because it keeps air from going out of the nose instead of the mouth.

The mouth and nose of a fetus develop early during pregnancy: between 5 and 12 weeks. Three developing areas must fuse (close) together to form the face. The pieces that form the palate usually come together like a zipper—when the growth process is disturbed for some reason, the zipper does not close all the way, leaving a cleft. Formation of the palate and the upper lip are separate processes, but they are linked, and many children born with a cleft palate also have a cleft lip. A cleft lip impairs sucking, speech, and appearance. The size and severity of a cleft depends on how much of the palate or lip has fused together. Clefts can consist of one split down the middle (a unilateral cleft) or two splits (a bilateral cleft).

Why Are Babies Born with Cleft Palates and Cleft Lips?

Cleft palates and lips probably are the result of a number of factors acting together. One in five cases is inherited, probably through the interaction of many different genes*. In most cases, however, clefts seem to be caused by environmental factors that the fetus is exposed to early in pregnancy. The German measles (rubella) virus, other infections, vitamin deficiencies, some medications, alcohol and drug use during pregnancy, all seem to increase the likelihood of a child being born with a cleft lip or palate. Prevention efforts are focused on teaching the public about these risk factors during pregnancy.

* genes

are chemicals in the body that help determine a person’s characteristics, such as hair or eye color. They are inherited from a person’s parents and are contained in the chromosomes found in the cells of the body.

What Happens to Children with Cleft Palate and Cleft Lip?

Symptoms

An improperly formed palate and/or upper lip affects a child’s physical and emotional health in many different ways:

• A cleft lip is a highly visible disfigurement, and a cleft palate can cause abnormal growth of the face. Uncorrected, they can lead to serious self-esteem problems.
• When a person speaks, sounds are made by directing air through the nose or the mouth. A complete upper lip also is required to make certain sounds. A cleft palate, however, lets air escape out the nose all of the time, resulting in unusual sounds.
• A hole in the palate can allow food or liquid to come out of the nose. Usually, the palate acts as a barrier and prevents this problem.

• Because a cleft palate allows liquid to invade the sinuses and ear tubes, children with cleft palates are prone to ear and sinus infections.
• Many children with cleft palates and/or cleft lips have dental problems such as missing bone, missing or malformed teeth, and malocclusion (top and bottom teeth that do not fit together properly). Such problems interfere with chewing and cause facial disfigurement.
• Some children with clefts also have congenital heart problems, growth disorders, or learning problems.

The U.S. and the World

• Clefts are one of the most common birth defects in the world. Approximately 1 in 700 babies is born with a cleft palate and/or cleft lip.
• More than 5,000 babies are born in the U.S. each year with these problems.
• Among people with clefts, 50 percent have both a cleft palate and a cleft lip; 30 percent have only a cleft palate; and 20 percent have only a cleft lip.
• Boys are twice as likely as girls to have a cleft lip or a cleft lip and palate, whereas girls are twice as likely as boys to have just the cleft palate.
• People of Asian, European, and Native American ancestry are more prone to clefts than other ethnic groups.
• Clefts are least likely to occur in people of African ancestry.

Operation Smile

Cleft palate repair requires multiple surgeries, and many people do not have access to or money for the medical care they need. In 1982, Dr. William P. Magee (a plastic surgeon) and his wife Kathleen (a nurse and social worker) founded Operation Smile to help make a difference.

Operation Smile and its volunteers provide free reconstructive (repair and rebuilding) surgery and other medical services for children in the United States and in 20 developing countries. Operation Smile volunteers have performed facial surgery on 50,000 children since 1982. In 1999, Operation Smile’s “World Journey of Hope ’99” helped 5,000 children in 19 countries.

Treatment

Fixing Philip’s cleft lip and palate will require several surgeries. When he is about three months old, a plastic surgeon will repair his lip by stitching the edges together using flaps of skin from other parts of his mouth. Philip s cleft palate will be repaired when he is between six months and a year old. If Philip is prone to ear infections, the doctor will put tubes in his ears to help drain them of the fluid that leads to infection. These repairs are done as early as possible to prevent hearing and speech problems.

Philip also may require several cosmetic surgeries to adjust his facial features as he grows older. He may need dental work to encourage jawbone growth and to straighten his teeth. He will have his hearing checked frequently by a hearing specialist (an audiologist), and he will work regularly with a speech therapist to learn how to train his palate muscles to work properly.

Philip and his parents will have a lot to deal with over the next several years, but his prognosis is good. The doctor expects that when Philip enters first grade, he will be speaking well, and he will have barely a scar where his cleft lip once was.

See also

Alcoholism

Birth Defects

Genetic Diseases

German Measles (Rubella)

Growth Disorders

Heart Disease

Heart Murmur

Infection

Pregnancy, Complications of

Substance Abuse

Viral Infections

Resources

Books

Berkowitz, Samuel. The Cleft Palate Story: A Primer for Parents of Children with Cleft Lip and Palate. Chicago: Quintessence Press, 1994.

Charkins, Hope. Children with Facial Difference: A Parent’s Guide. Bethesda: Woodbine House, Inc., 1996.

Organizations

U.S. National Institute of Dental and Craniofacial Research, Building 31, Room 2C35, 31 Center Drive, MSC 2290, Bethesda, MD 20892-2290. http://www.nidcr.nih.gov

American Cleft Palate-Craniofacial Association, 104 South Estes Drive, Suite 204, Chapel Hill, NC 27514. Telephone 800-24-CLEFT or 800-242-5338 http://www.cleft.com

American Speech-Language-Hearing Association, 10801 Rockville Pike, Rockville, MD 20852. Telephone 800-638-8255 or 301-897-5700 (TTY) http://www.asha.org

Operation Smile, 6435 Tidewater Drive, Norfolk, VA 23509. (757) 321-7645. http://www.operationsmile.org

cleft palate Congenital deformity in which there is an opening in the roof of the mouth, causing direct communication between the nasal and mouth cavities. It is often associated with harelip and makes normal speech difficult. Usual treatment includes surgical correction, followed by special dental care and speech therapy if necessary.

cleft palate n. a fissure in the midline of the palate due to failure of the two sides to fuse in embryonic development. Only part of the palate may be affected, or the cleft may extend the full length with bilateral clefts at the front of the maxilla; it may be accompanied by a cleft lip and disturbance of tooth formation.

cleft pal·ate • n. a congenital split in the roof of the mouth.