We are committed to partnering with you and your family to ensure the very best care for your child. We are here for you, and we welcome any questions that you may have. If you are expecting a child with a cleft, we do offer pre-natal consults. If you are new to our clinic, we look forward to establishing a relationship with your family.... Welcome Letter to New Families
What Is a Cleft Lip and/or Palate
A cleft lip is a separation of the two sides of the lip. The separation may also include the upper gum line, the nose, and the bones of the upper jaw. The degree of involvement of the lip and of the nose varies. The cleft can be very minor in a condition called a microform cleft lip, can involve a portion of the lip (an incomplete cleft lip), or the entire upper lip (a complete cleft lip). The cleft may involve one side of the lip (unilateral) or both sides of the lip (bilateral).
A cleft palate is an opening in the roof of the mouth. This happens when the two sides of the palate do not join together when the unborn baby is developing in the womb. Cleft lip and palate can involve one side (unilateral cleft lip and/or palate) or both sides (bilateral cleft lip and/or palate). Because the lip and palate develop separately, it is possible for the child to have a cleft lip, cleft palate, or both a cleft lip and palate.
How Common Is It?
Cleft lip and cleft palate are the most common birth defects in the United States. It is estimated that approximately 1 out of every 600 newborns is affected with cleft lip and cleft palate. The formation of a cleft lip and a cleft palate occurs early in the pregnancy during the first trimester. The cause of most clefts are the result of a combination of genetic and environmental factors. The risk of recurrence of a cleft condition depends on a number of factors, including the number of affected persons in the family, the relation of the affected relative, the race and sex of the affected person, and the severity of the cleft.
What Should I Expect?
There are a number of member of the cleft team, who may take care of your child. Some of these specialists include the plastic/craniofacial surgeon, otolaryngologist (ear, nose, and throat doctor), dentist/orthodontist, speech pathologist, audiologist (hearing specialist), nurses, mid-level practioners, and social workers. When the palate is involved, this can affect speech, feeding, dental development, ear health, and hearing. Therefore, a number of disciplines work together to oversee all of these aspects that are involved in cleft care.
When Are Cleft Lip and Cleft Palate Repaired?
There are multiple factors that may affect the timing of the lip and palate repair. In general, a cleft lip is usually repaired at around 3 months of age and the palate is repaired between 9 and 12 months of age. In some children with a cleft lip and palate, a NAM (nasoaleolar molding) device will be used prior to the lip repair. This device, designed by the orthodontist on the team, helps to align the gumline, lip, and nose prior to the cleft lip repair. To get the full effect of this molding, the lip repair is sometimes delayed for a month or two in some children that are undergoing NAM treatment. The overall health of the child is also taken into account in the timing of the cleft repair. Factors such as prematurity, low weight, airway concerns, and other congenital conditions (such as congenital heart defects) are considered in the timing as well. These factors are discussed among the members of the cleft team and in coordination with your child’s primary physician.
Ears and Hearing
Children with cleft palates are at an increased risk of ear infections and forming fluid in their middle ears (middle ear effusion). The muscles of the palate normally help open the eustachian tube—a tube that connects the middle ear to the throat. In children with a cleft palate, the muscles of the palate are in the wrong location and therefore the eustachian tubes are not able to open up effectively, and air cannot enter the middle ear cavity. When this happens, fluid builds up in the middle ear.
This is a common occurrence in children born with cleft palates. This may result in frequent ear infections and puts the eardrum at risk of being permanently deformed, which can lead to hearing loss. The hearing loss can also adversely affect speech development. The ENT (Ear, Nose, and Throat) surgeon on the cleft team commonly performs a minor procedure called a myringotomy, where a slit is made in the ear drum to drain the fluid. A small tube is then placed in the slit to allow air into the middle ear and to prevent fluid from building up again. This operation is usually performed under anesthesia at the same time as the lip or palate repair when possible.
Ear disease and hearing are monitored on a routine basis. Hearing tests are performed by an audiologist. One type of hearing screening test, called tympanometry, measures the response of the middle ear cavity to sound. Another screening test, called otoacoustic emissions testing, or OAE for short, measures the response of the hearing nerve. These tests may result in referral for additional testing.
Speech and Language Development
Speech and language development is a common concern for parents of children born with clefts. The first few years of life are important years for language development in all children. If a child has an isolated cleft of the lip (without palate involvement), speech should be developmentally normal as long as hearing loss or other problems are not present.
Approximately 80% of children born with a cleft palate develop typical speech once their palate is repaired. Speech therapy may be necessary. Other children may also require a speech surgery or a prosthetic device to improve speech.
A major goal of cleft palate repair is to ensure good quality of speech at the earliest age. Usually, the palate is repaired in the first year of life. Circumstances such as airway issues or other medical issues may factor into the decision by the cleft team members on when to repair the cleft palate.
Children born with a cleft palate tend to be a bit slower than other children in their speech and language development. Speech may not sound typical before palate repair, but it tends to improve afterward. Children tend to catch-up for 4-5 years. Speech therapy is often necessary during these years in order to improve the quality of your child’s speech.
Children born with a cleft palate are at an increased risk for delay in their language development for several reasons. For example, early attempts at words might not be understood, and therefore not reinforced by parents. Because of these risks, it is important to continue to follow with your cleft team with periodic evaluation by the speech-pathologist.
From birth onward, speech and language continue to develop. Months before babies say their first words, babies can communicate with their parents, making cooing and babbling sounds. These sounds and other social behaviors are important components of early development. By 6-8 months of age, your child should be babbling, producing syllables that combine vowels and consonants, such as mama, nana, or yaya. If the palate is unrepaired at this age, as is usually the case, you will notice that the sounds that your child is producing in babbling are different from what other children without clefts are producing.
Dental care begins when the first tooth erupts. As soon as the first tooth erupts, it should be gently brushed with water or with a damp cloth after feedings. Because milk left on the teeth can cause cavities, it is important to not let your child fall asleep with a bottle in his mouth. Babies with clefts usually have all of their baby teeth, but they may be missing some of their permanent teeth. These missing tooth buds will be identified when your child is older, usually in the pre-school or school-age years through x-rays. Children with clefts that involve the upper gum line often have teeth that are turned or misshapen. The dental specialist will discuss how these problems can be treated as your child grows. Often in children with cleft palates, the growth of the lower jaw outpaces the growth of the upper jaw. This leads to an underbite. Treatment may require orthodontic care and sometimes a jaw surgery when your child is older.