| Cleft deformities involving a cleft lip (opening in the lip) and/or cleft palate (opening in the roof of the mouth) occur in about 1 in 700 births throughout the world and are the most common craniofacial birth defect. Although it isn't usually know what causes a child to have a cleft deformity, about one third of cases are in children with a positive family history and other children in the family with a cleft deformity. It is also known to be more common for children with cleft deformities to have a mother who smokes. Cleft deformities are also associated with a number of syndromes, including Pierre Robin and Stickler syndromes and many others.
The most common cleft deformity is a bifid uvula. Although children can have an isolated cleft lip or an isolated cleft palate, in 50% of cases children have both a cleft lip and a cleft palate, which is usually left sided.
Although often diagnosed at delivery, many children with cleft deformities are diagnosed prenatally by ultrasound. Once diagnosed, children with cleft deformities should see a Pediatric Plastic Surgeon who has experience treating children with cleft deformities. Many larger Children's Hospitals also have a Cleft Lip and Palate Team that can coordinate the care of your child, including a plastic surgeon and a pediatric orthodontist and may also include an otolaryngologist, speech pathologist, and audiologist. You may also want to see a geneticist to find out about your chances of having another child with a cleft deformity.
Children with cleft deformities, especially cleft palates, can have feeding difficulties because they have a hard time generating an adequate suck to breast or bottle feed. Using a cross cut nipple, cleft palate nipple or other adaptive nipple, or a special feeder (such as the Haberman feeder) and using proper positioning (semi-upright position during feedings) may make feeding easier. By allowing the care giver to squeeze the formula or breast milk out of the nipple and into the baby's mouth, the baby with a cleft palate doesn't have to generate suction to get the fluid out himself. Breastfeeding mothers can allow their children to breastfeed for short periods of time, but will probably need to express the breast milk and offer it with a feeding device. See a lactation consultant that has experience with cleft deformities for help if you are trying to breastfeed and have a child with a cleft deformity. Breastfeeding is usually possible for infants with a cleft lip, but is usually not possible for those with a cleft palate.
One of the problems that develop in children with cleft palates is a delay in speech development, and speech therapy may be required. However, 80% of children have normal speech after a cleft palate repair. Children who have had a cleft palate repair and who develop a problem with having a nasal speech quality may have velopharyngeal incompetence and may require speech therapy and/or repair with secondary surgical procedure (usually done at 5-7 years of age).
A cleft palate is also associated with having recurrent middle ear infections, and to prevent this, many children also have bilateral myringotomy and insertion of tubes at the time of their repair.
Treatment begins very early after a child with a cleft deformity is born and usually involves presurgical orthodontics, which are special dental appliances that can improve the final cosmetic outcome. The timing of the surgical repair is controversial and can range from having a cleft lip repair as early as two weeks of age or waiting until the child is one to three months of age. A one-stage surgical procedure may also make it possible to repair the cleft lip nasal deformity at the same time as the cleft lip is repaired, at least for one sided deformities. Bilateral cleft lip repair can be more difficult and usually requires a second stage surgery at a later time to repair the nasal deformities. Children are usually able to eat fairly soon after the operation is completed, and unless there are complications, only need to be in the hospital for 24-48 hours.
The timing of cleft palate repairs is also controversial and can range from a complete repair before six months of age, to a delayed complete repair between 12 and 24 months or an early soft palate repair, followed by a later hard palate repair. After a cleft palate repair, children are usually able to begin eating formula, breast milk or other liquids and soft foods fairly quickly and generally only need to spend 24-48 hours in the hospital.
Secondary deformities and problems with malocclusion are usually repaired at a later time.
Internet Resources:
- The Cleft Palate Foundation: "a nonprofit organization dedicated to providing information to parents of newborns with clefts and other craniofacial birth defects and to the health care professionals who deliver and treat these infants."
- WIDE SMILES Cleft Lip and Palate Resource: "WIDE SMILES was formed to ensure that parents of cleft-affected children do not have to feel alone. We offer support, inspiration, information and networking for families everywhere who may be dealing with the challenges associated with clefting."
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