Cleft lip and cleft palate Research (ACNRC)

Cleft lip and cleft palate A cleft lip contains an opening in the upper lip that may extend into the nose. The opening may be on one side, both sides, or in the middle. A cleft palate occurs when the palate contains an opening into the nose. The term orofacial cleft refers to either condition or to both occurring together. (MCAF) Diagnosis A cleft lip and/or palate can be diagnosed in utero as early as the 13th week. Usually, a cleft lip is easier to be seen and sometimes a palate is not recognized until birth. Having an early diagnosis allows families to receive early intervention and get referred to a craniofacial multidisciplinary team even before their child is born. Craniofacial teams usually consist of a plastic/craniofacial surgeon, pediatrician, orthodontist, pediatric dentist, speech and language specialist, otolaryngologist (ear-nose-throat specialist Cause and Risks While the cause of cleft lip and palate is uncertain, a child’s genes and some maternal health conditions such as having diabetes, the use of certain medications, smoking, alcohol consumption, or lack of Vitamin B can increase the risk. In addition, poverty, nutrition, and environmental factors play a large role.  In places like Latin America, a child is roughly two times as likely to be born with a cleft condition than children in the U.S. Health and Developmental Impacts Children born with a cleft lip or palate often face one or more of these health problems: feeding/eating/swallowing disorders, failure to thrive, delayed or disordered speech and language, breathing and hearing difficulties, chronic ear infections and dental problems. Cleft treatment and intervention should be started as early as possible, with a proper surgical treatment plan and wraparound care into adulthood, a child should be able to restore normal function and live a happy, healthy and fulfilling life. Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don’t close completely. Cleft lip and cleft palate are among the most common birth defects. They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes. Having a baby born with a cleft can be upsetting, but cleft lip and cleft palate can be corrected. In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring. Symptoms Usually, a split (cleft) in the lip or palate is immediately identifiable at birth. Cleft lip and cleft palate may appear as:

• A split in the lip and roof of the mouth (palate) that affects one or both sides of the face
• A split in the lip that appears as only a small notch in the lip or extends from the lip through the upper gum and palate into the bottom of the nose
• A split in the roof of the mouth that doesn’t affect the appearance of the face

Less commonly, a cleft occurs only in the muscles of the soft palate (submucous cleft palate), which are at the back of the mouth and covered by the mouth’s lining. This type of cleft often goes unnoticed at birth and may not be diagnosed until later when signs develop. Signs and symptoms of submucous cleft palate may include:

• Difficulty with feedings
• Difficulty swallowing, with potential for liquids or foods to come out the nose
• Nasal speaking voice
• Chronic ear infections

When to see a doctor A cleft lip and cleft palate are usually noticed at birth, and your doctor may start coordinating care at that time. If your baby has signs and symptoms of a submucous cleft palate, make an appointment with your child’s doctor. Causes Cleft lip and cleft palate occur when tissues in the baby’s face and mouth don’t fuse properly. Normally, the tissues that make up the lip and palate fuse together in the second and third months of pregnancy. But in babies with cleft lip and cleft palate, the fusion never takes place or occurs only part way, leaving an opening (cleft). Researchers believe that most cases of cleft lip and cleft palate are caused by an interaction of genetic and environmental factors. In many babies, a definite cause isn’t discovered. The mother or the father can pass on genes that cause cleating, either alone or as part of a genetic syndrome that includes a cleft lip or cleft palate 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 actually causes the cleft to occur. Risk factors Several factors may increase the likelihood of a baby developing a cleft lip and cleft palate, including:

• Family history.Parents with a family history of cleft lip or cleft palate face a higher risk of having a baby with a cleft.
• Exposure to certain substances during pregnancy.Cleft lip and cleft palate may be more likely to occur in pregnant women who smoke cigarettes, drink alcohol or take certain medications.
• Having diabetes.There is some evidence that women diagnosed with diabetes before pregnancy may have an increased risk of having a baby with a cleft lip with or without a cleft palate.
• Being obese during pregnancy.There is some evidence that babies born to obese women may have increased risk of cleft lip and palate.

Males are more likely to have a cleft lip with or without cleft palate. Cleft palate without cleft lip is more common in females. In the United States, cleft lip and palate are reportedly most common in Native Americans and least common in African-Americans. Complications Children with cleft lip with or without cleft palate face a variety of challenges, depending on the type and severity of the cleft.

• Difficulty feeding.One of the most immediate concerns after birth is feeding. While most babies with cleft lip can breast-feed, a cleft palate may make sucking difficult.
• Ear infections and hearing loss.Babies with cleft palate are especially at risk of developing middle ear fluid and hearing loss.
• Dental problems.If the cleft extends through the upper gum, tooth development may be affected.
• Speech difficulties.Because the palate is used in forming sounds, the development of normal speech can be affected by a cleft palate. Speech may sound too nasal.
• Challenges of coping with a medical condition.Children with clefts may face social, emotional and behavioral problems due to differences in appearance and the stress of intensive medical care.

  Treatment Procedure Cleft lip and palate treatment involves a variety of procedures and care, including:

• Surgery: Cleft lip surgery is usually performed before a baby’s first birthday, and cleft palate surgery is usually performed before 18 months. Additional surgeries may be needed as the child grows.
• Feeding techniques: Babies with cleft palates may need special feeding techniques to ensure they get enough calories and gain weight.
• Dental and orthodontic care: Children with cleft lip and palate may need special dental or orthodontic care.
• Speech therapy: Children with cleft lip and palate may need speech therapy.
• Hearing evaluation: Babies with cleft palates may need a hearing evaluation.
• Ventilating tubes: Babies with cleft palates may need ventilating tubes.
• Alveolar bone grafting: Alveolar bone grafting can help create a more complete dental arch.
• Rhinoplasty and orthognathic surgery: These procedures may be needed for children over 12 years old.
• Genetic counseling: Genetic counseling may be available.

Lip taping: Lip taping may be available. (MCAF