FAMILY HEALTH Parenting Infants • Colic • Diaper rash • Infant jaundice • Spina bifida • Ventricular septal defect (VSD) • Tetralogy of Fallot • Coarctation of the aorta • Umbilical hernia • Ambiguous genitalia • Cleft lip and cleft palate • Infant acid reflux • Pyloric stenosis • Undescended testicle (cryptorchidism) CHILDREN'S HEALTH Birth Defects • Down syndrome • Fetal alcohol syndrome • Phenylketonuria • Ambiguous genitalia • Rett syndrome • Cleft lip and cleft palate • Familial Mediterranean fever • Clubfoot CHILDREN'S HEALTH Infants • Colic • Diaper rash • Infant jaundice • Spina bifida • Ventricular septal defect (VSD) • Tetralogy of Fallot • Coarctation of the aorta • Umbilical hernia • Ambiguous genitalia • Cleft lip and cleft palate • Infant acid reflux • Pyloric stenosis • Undescended testicle (cryptorchidism)

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Cleft lip and cleft palate are among the most common birth defects, affecting more than 5,000 infants a year in the United States — or about one in 700. A cleft is an opening or a split in the upper lip, the roof of the mouth (palate) or both. In the womb, every baby has this opening when the mouth is forming, but the structures fuse together during the first three months. In babies with cleft lip or cleft palate, the fusion never takes place or occurs only partially, leaving an opening.

Cleft lip can affect one or both sides of the upper lip. Cleft lip and cleft palate commonly occur as isolated birth defects, but they're also associated with more than 300 known genetic conditions.

The look of a cleft lip may be startling at first, but know that this defect is correctable through surgery. In most babies, doctors can correct the defect with minimal scarring, restoring normal function and resulting in a more normal appearance.

The cleft, or split, in the lip or palate is usually immediately identifiable at birth. Clefts can appear as only a small notch in the lip or can extend from the lip through the upper gum and palate.

Less commonly, a cleft occurs only in the muscles of the soft palate (submucous cleft), which is at the back of the mouth and covered by the mouth's lining. Because it's hidden, this type of cleft may not be diagnosed until later.

Researchers believe that most cases of cleft lip and cleft palate are caused by a unique interaction of genetic and environmental factors, although a definite cause may never be discovered for every baby.

• Genetic factors. Either the mother or father can pass on genes that cause clefting, either as an isolated defect or as part of a syndrome that includes clefting as one of its signs. In some cases, babies inherit a gene that makes them more likely to develop a cleft and then an environmental trigger causes the cleft to occur.
• Environmental factors. Fetal exposure to cigarette smoke, alcohol, certain medications, illicit drugs and certain viruses have been linked to the development of a cleft. Researchers believe that some clefts may be caused by nutritional deficiencies in the mother, particularly a lack of folic acid.

Several factors may increase the likelihood of a baby developing a cleft lip and cleft palate.

• Family history. Parents with a family history of cleft lip or cleft palate have a higher risk of having a baby with a cleft. Cleft lip is more likely to be inherited than is a cleft palate.
• Race. Clefts are more common in children of Native American, Latino or Asian descent. African-American children are least likely to have a cleft.
• Gender. Males are twice as likely as females to have a cleft lip. Females, however, are about twice as likely as males to have a cleft palate.
• Environmental factors. Exposure in early pregnancy to cigarette smoke, alcohol or illicit drugs may put a baby at higher risk of developing a cleft.

A cleft lip and cleft palate usually are apparent at birth, and your doctor may start coordinating treatment at that time.

A submucous cleft palate, which is "hidden" by the mouth's lining, may not be diagnosed until later when symptoms develop. Some babies with this type of cleft have trouble with feeding, including nasal regurgitation and excessive gassiness. Later, as speech develops, you may notice a nasal-sounding voice or increased nasal discharge. If your child has these symptoms, see your doctor.

Most cases of cleft lip and cleft palate are discovered at birth, but they're increasingly being diagnosed by ultrasound before the baby is born.

After birth, genetic testing may help determine the best treatment for your child, especially if the cleft is associated with a genetic condition. Genetic testing also informs parents of their risk of having additional children with cleft lip or cleft palate.

Children with cleft lip with or without cleft palate face a variety of challenges related to their defect, depending on the type and severity of the cleft.

• Feeding. One of the most immediate concerns after the birth of an infant with cleft lip and cleft palate is feeding, which can be difficult due to inadequate suction, lack of an airtight latch or nasal regurgitation. Your doctor will discuss feeding strategies with you, such as special bottle nipples, frequent burping and special feeding appliances called obturators.
• Ear infections and hearing loss. Babies with cleft palate are especially susceptible to repeated middle ear infections, which over time can permanently damage hearing. It's important for these children to be evaluated regularly by an audiologist or ear, nose and throat doctor.
• Dental care and tooth development. If the cleft extends through the upper gum, tooth development will likely be affected. A pediatric dentist should monitor tooth development and oral health from an early age.
• Speech and language. Because both the lip and palate are used in forming sounds, the development of normal speech can be affected. A speech pathologist can evaluate your child and provide speech therapy for this problem.
• Psychological challenges. Children with clefts are more likely to have social, emotional and behavioral problems due to differences in appearance and family stress. A psychologist and a social worker can help you and your child deal with the stresses your family encounters.

A health care team that specializes in cleft lip and cleft palate is ideal because the condition often affects other areas of a child's health. Treatment involves surgery to repair the defect and therapies to improve any related conditions.

Surgery
Children with cleft lip should have surgery between birth and 3 months. Children with cleft palate should have surgery during the first 12 months of life. Following the initial cleft repair(s), your doctor may recommend follow-up surgeries to improve speech or improve the appearance of the lip and nose. Surgeries typically are performed in this order:

• Cleft lip repair — between birth and 3 months
• Cleft palate repair — by one year of age
• Follow-up surgeries — between age 2 and late teen years

For children with cleft palate, ear tubes also may be placed during the first surgery to ventilate the middle ear and prevent hearing loss. Your doctor will determine the optimal time for all needed surgeries.

Therapies
Your doctor may recommend additional treatments based on continuing assessment of your child's speech, developmental and cognitive abilities. These may include speech and psychological therapies.

Emerging treatments
Based on new research, it may soon be routine for doctors to repair cleft lip and cleft palate in fetuses before birth. Doctors hope that minimally invasive surgical techniques will make this possible, since the risk to the mother and baby is reduced by smaller incisions. One major advantage of in utero repair of cleft lip and cleft palate is "scarless healing," a phenomenon in which the surgical wounds made in a young fetus heal with little or no noticeable scar. This early repair also has the potential to interrupt the secondary effects of cleft lip and cleft palate, such as speech, dental and hearing problems, as well as counteracting psychological issues for the child and family.

After a baby is born with a cleft, parents are understandably concerned about the possibility of having another baby with the same condition. While many cases of cleft lip and cleft palate are unpredictable, you can take steps to understand or lower your risk:

• Genetic counseling. Your doctor will advise you on what genetic testing can tell you, such as how much a history of clefting in both your families increases your risk, as well as how blood or DNA samples can test for chromosomal syndromes.
• Prenatal vitamins. Some researchers believe that lack of folic acid or certain vitamins may be related to some cases of cleft lip and cleft palate. If you're planning to get pregnant soon, begin taking a prenatal multivitamin now.

No one expects to have a baby with a birth defect. When the excitement of new life is met with the stress of discovering that your baby has a cleft lip or cleft palate, the experience can be emotionally taxing on the entire family.

For the parents and family
When welcoming a baby with cleft lip and cleft palate into your family, keep these coping tips in mind:

• Don't blame yourself. There's probably nothing you could have done differently to prevent the defect.
• Acknowledge your emotions. It's completely normal to feel sad, overwhelmed and upset.
• Find support. Your hospital social worker is your source for community and financial resources and education.

For the child
A child with cleft lip and cleft palate is at risk of having psychological or social problems when growing up. Support your child by using these coping tools:

• Focus on your child as an individual, not on his or her cleft.
• Point out positive attributes in others that don't involve physical appearance.
• Help your child gain confidence by allowing him or her to make decisions.
• Keep the lines of communication open. If teasing or self-esteem issues arise in school, be sure your child feels safe talking with you about it.