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Cleft lip and cleft palate

  • Here at Boston Children's Hospital, our training, experience and commitment to innovative care with compassion have made us a national leader in the care of children and adolescents with cleft lip and cleft palate.

    John Meara, MD, DMD, MBA, Children's plastic surgeon-in-chief

    The first three months of a pregnancy are a critical time for a growing fetus: In addition to many other developments taking place throughout the body, the structure of the mouth and face also begins to take shape.

    Normally, at around the fifth or sixth week, the two sides of a baby’s upper lip begin to fuse together. Sometimes, though, the fusing doesn’t happen the right way and the upper lip is split, or cleft.

    A child with a cleft lip has a visible separation in the skin of her top lip. This space can be a small hole, or it can be a significant opening that extends from the base of the baby’s nose all the way down to her top jaw and gums.

    Between the eighth and twelfth weeks of pregnancy, the roof of a baby’s mouth begins to form. The roof of the mouth is made up of two parts:

    • the hard palate, the firm and bony plate hugging the horseshoe-shaped curve of the top teeth
    • the soft palate, the flexible, fleshier tissue that spans the back of the mouth

    When the development of one or both of these parts is incomplete, the baby has what is known as a cleft palate.

    A child can be born with a cleft lip, a cleft palate or both. Cleft lip/cleft palate:

    • when combined, affect one in every 700 babies born in the U.S., making them the fourth most common birth defect nationwide

    • can be unilateral—involving only one side of the mouth and face—or bilateral, involving both

    • are more common in boys than girls 

    • affect more children of Asian, Latino and Native American descent—and fewer of African-American descent—than children of other ethnicities

    The good news is that cleft lip/cleft palate are very treatable. Although children with more advanced cases may require assistance in several areas, and may need multiple procedures over time, there are several minimally invasive treatment options available to help them regain a normal appearance and range of functions.

    How Boston Children's Hospital approaches cleft lip and cleft palate

    Boston Children's Hospital treats children with cleft lip, cleft palate and the combination of both defects through our dedicated Cleft Lip and Palate Program.

    Our program:

    Here at Children’s, our compassionate clinicians also understand the emotional and psychosocial toll cleft lip/cleft palate can cause. We recognize your child as an individual—never “just a patient”—and provide vital resources and support to meet the needs of your entire family.

    Cleft lip/cleft palate: Reviewed by John G. Meara, MD, DMD, MBA, and John B. Mulliken, MD
    © Children’s Hospital Boston; posted in 2011

  • The shape and structure of a baby’s mouth and face begin to materialize in the early weeks of pregnancy:

    • Around the fifth to sixth week, the two sides of the upper lip fuse together.

    • Between the eighth and twelfth week, the roof of the mouth is formed.

    However, when something goes wrong in one or both of these processes, the result is often a cleft lip and/or a cleft palate.

    • A cleft lip is a split, or cleft, in the skin of the upper lip. This defect can range in size from a tiny, almost imperceptible hole to a very large opening that includes the top gum and top jaw.

    • A cleft palate is an opening in the roof of the mouth. This opening can go through the bony hard palate around the top row of teeth; through the fleshy soft palate at the back of the mouth; or through both parts.

    Many children have both a cleft lip and a cleft palate. If the defect only occurs on one side, it is called unilateral. If it involves both sides, the cleft lip/cleft palate is bilateral.

    Cleft lip/cleft palate can present a number of obstacles for a child, including possible:

    • feeding issues
    • dental and orthodontic problems
    • speech and language difficulties
    • hearing impairment
    • social and self-esteem challenges

    Because cleft lip/cleft palate can vary widely in severity from child to child, treatment options also encompass a broad spectrum. A baby with a very minor, unilateral cleft lip, for example, might only need one procedure, while an infant with an extensive defect that runs through both sides of his palate may require many different interventions throughout his childhood.

    You can rest assured that—regardless of the extent of your child’s cleft lip/cleft palate—there is plenty of cause for hope: These defects are very manageable. In fact, thanks to recent advances in diagnostics and care, treatment can often start right at birth.

    Here at Children’s Hospital Boston, our multidisciplinary Cleft Lip and Palate Program is designed to meet the needs of children of all ages and with all variations of cleft lip/cleft palate. No matter your child’s specific circumstances, we are ready to help him—and to include you and your family in the treatment process at every step of the way.


    Causes 

    What causes cleft lip/cleft palate?

    We know that cleft lip/cleft palate are congenital defects—always present at birth—and that they involve a disruption to the formation of the fetus’s top lip and/or roof of the mouth. However, no one knows exactly why these disruptions take place.

    It is believed that cleft lip/cleft palate may be genetic conditions (resulting from an error in the genes). Some children with cleft lip/cleft palate have other family members with the defect, but in most cases, there is no evidence of any family history.

    Scientists believe that some instances of cleft lip/cleft palate may happen because of something that affected the mother during pregnancy, including:

    • taking certain medications
    • using tobacco or alcohol
    • vitamin deficiency
    • viral illness

    Finally, in very rare cases, a child’s cleft lip/cleft palate may be related to the connective tissue disorder Stickler syndrome.

    Signs and symptoms

    What are the symptoms of cleft lip/cleft palate?
    Nearly all babies with cleft lip/cleft palate are diagnosed at birth (or even before, through prenatal ultrasound) because the defects are readily apparent.

    In rare cases, a child may have a cleft palate that only involves her soft palate (the fleshy tissue at the back of her mouth) and isn’t evident on an initial visual exam. The first sign of a problem in these babies is usually difficulty feeding (an inability to latch on to the breast or bottle nipple, or to use consistent suction while nursing).

    FAQ 

    Q: Do children with a cleft lip always have a cleft palate (or vice versa)?
    A: No. A child can be born with just a cleft lip, just a cleft palate or a cleft lip and cleft palate together.

    Q: Can cleft lip/cleft palate be prevented?
    A: At the moment, there is no known way to prevent cleft lip/cleft palate; in order to understand how to prevent these defects, we would first need to understand how and why they occur. Researchers are hard at work on uncovering new insights, but have found no proven cause as of yet.

    Some theories suggest that certain steps might contribute to preventing cleft lip/cleft palate, namely:

    Q: Are all cleft lips the same?
    A:
    No; in fact, there are several types of cleft lip.

    The lip, nose and palate can all be involved to varying degrees. The major types of cleft lip are:

    • unilateral (occurring to either the left or right of the midline of the face and mouth; for reasons we don’t fully understand, the left side is more commonly affected)
    • bilateral (occurring on both the left and right sides)

    And there are three subtypes:

    • incomplete (only partial fusion of the two sides of the top lip)
    • complete (total absence of any fusion)
    • asymmetrical (complete on one side and incomplete on the other)

    Q: Can my child’s cleft lip be repaired?
    A: Yes. Your child’s cleft lip can be closed with a surgical procedure. After the operation, your child’s mouth and nose will be near normal in appearance and should function normally.

    Q: When will my child’s cleft lip be repaired?
    A: Most cleft lips are closed before 6 months of age. If your child also has a cleft palate, that will be repaired in a separate operation. Your plastic surgeon will talk to you about the best surgical for your child.

    Q: Are all cleft palates the same?
    A: No. The palate is composed of two parts, a fleshy, muscular part (soft palate) and a bony part (hard palate). The soft and hard palate can be involved to varying degrees.

    Q: Can my child’s cleft palate be repaired?
    A: Yes. The opening in the hard and/or soft palate is usually closed in one operation, though your child may need more than one procedure depending on his particular circumstances. Your treatment team will outline specific recommendations.

    Q: Are there genetic tests to screen for cleft lip/cleft palate?
    A: Unfortunately, no. At this time, there are no available tests that can detect the genetic changes responsible for cleft lip/cleft palate.

    Q: If my child has cleft lip/cleft palate, what are the chances that my future children will have the defect, too?
    A:
    The chance of having more than one child with a cleft lip and/or cleft palate is different for each family. In general, if there is one affected person in the family with a cleft, the likelihood of having a child with a cleft lip and/or palate is 2 to 5 percent. If there is a second affected person in the family (either another sibling or a parent), the chance of future children having a cleft lip increases to 10 to 14 percent, and the risk of a future child having an isolated cleft palate rises to 8 percent.

    Here at Children’s, a geneticist on your child’s cleft treatment team can provide detailed information about your family’s particular situation.

    Q: Can I breastfeed my baby?
    A:
    If your infant has a cleft lip only, attachment to the breast is fine with some adaptation to cover the cleft. If breastfeeding is not an option, then any type of silicone nipple and bottle may be used. Learn more in our Treatment section.

    Q: Will my child have difficulty hearing?
    A: Not necessarily, but it is possible.Children born with a cleft palate often have temporary hearing loss because of fluid in the middle ear and recurring ear infections. This hearing loss may last for a short time, or it may persist for a number of months.

    Speech and language development is influenced by a child’s ability to hear well. Your child will undergo her first hearing test early in life, and will be tested again prior to the operation to repair her cleft palate. Her age and developmental level will determine which hearing test method will be used. Learn more in our Treatment and Care section.

    Q: Will my child experience difficulty speaking?
    A: Possibly. Some children with a cleft palate have speech and language delays. These may be related to the temporary hearing loss associated with the cleft palate and middle ear fluid.

    Some children exhibit difficulty with speech if their palate is not effectively closing off the nose from the mouth while they are speaking. However, the good news is that most will acquire speech and language skills at a normal pace after the palate is closed and middle ear tubes are placed for drainage. Learn more in our Treatment and Care section.

    Q: Will my child’s cleft lip/cleft palate affect his dental health?
    A: If your child has a cleft lip and/or cleft palate, he may be more susceptible to developing cavities. Learn more in our Treatment and Care section.

    Q: Will my child need orthodontic therapy?
    A: It’s likely. Since the bite is almost always affected in some way, most children with a cleft palate require one or more phases of orthodontic treatment (usually braces). Learn more in our Treatment and Care section.

  • The first step in treating your child is forming an accurate and complete diagnosis. 

    How is cleft lip/cleft palate diagnosed?
    In most cases, a prenatal ultrasound can detect cleft lip/cleft palate as early as 16 weeks into a pregnancy. The diagnosis is then confirmed at birth with a detailed visual assessment and physical examination.

    Rarely, a baby may have a mild instance of cleft palate that only involves her soft palate—the fleshy tissue at the back of her mouth. This type of cleft may not show up on ultrasound, and may not be noticeable until the infant experiences difficulty feeding. At that point, a clinician will perform a comprehensive exam to identify the exact nature of the problem.


  • Treatment for a cleft lip/cleft palate usually involves reconstructive surgery and several key support services.

    Here at Boston Children's Hospital, our Cleft Lip and Palate Program uses a multidisciplinary team approach—not only to repair the child's specific defect, but also to address any and all related complications.  

    While your child's treatment plan will depend on his individual circumstances—as well as your family's preferences—here are the basics of treating cleft lip/cleft palate:

    Surgical repair: Cleft lip

    What is a “lip-nasal adhesion” procedure? Does my child need one before his cleft lip repair?
    For some children with a unilateral cleft lip, the first operation they need is a lip-nasal adhesion. This operation is performed at about 3 months of age, and involves:

    • a simple closure of the lip
    • the first stage of nasal correction
    • when possible, closure of the cleft in the upper gum (this procedure is called gingivoperiosteoplasty)

    How and when is an incomplete cleft lip typically repaired?
    An incomplete cleft lip, either unilateral or bilateral, is usually repaired with one operation when the child is between 3 and 5 months of age. During this operation, the baby's nasal asymmetry (unevenness in the shape of the nose) is also corrected.

    During the repair procedure, a plastic surgeon uses the existing muscle and tissues of the child's lip and nose to close the cleft. Repair of a unilateral cleft lip is typically performed in the operating room under general anesthesia. The child will stay in the hospital for one to two nights after the operation.  

    How and when is a complete cleft lip typically repaired?
    A child with a complete cleft lip typically needs two operations. The second operation is a more comprehensive repair of the cleft lip and correction of the nose. This procedure usually takes place at 5 to 6 months of age.

    How will my child look after his cleft lip is repaired?
    After the operation, your child's lip, nose and face will be swollen for a few days. His scar may be red for several weeks. It will take 6 to 12 months for the scar to soften and fade.

    Although it will never completely disappear, in time, the scar will become difficult to see. Your child's lip and nose will be nearly normal in appearance after the swelling and scar have subsided.

    As my child gets older, will he need another operation on his lip or nose?
    Although some children need to have another procedure on their lips and/or nose before they begin school, or as they enter adolescence, other children never need further surgeries.

    Children whose cleft lips involve the alveolus, or gum line, typically need another operation to help their permanent teeth come in and to make it easier for orthodontic treatments to improve their bite and jaw function. This operation is called an alveolar bone graft, and is usually performed when the child is 8 to 10 years old. You can read more about this surgery in the “Managing dental and orthodontic issues” section of this page.

    Surgical repair: Cleft palate

    How is a cleft palate usually repaired?
    A plastic surgeon brings together the separated muscles and tissue from the two halves of the palate to close the opening. This procedure is performed in the operating room under general anesthesia. Your child will be in the hospital anywhere from one to three nights after the operation.

    When will my child's cleft palate be repaired?
    A cleft palate is typically closed between the ages of 8 and 11 months, before a baby makes his first attempt to speak. Your child's plastic surgeon will discuss the best repair plan for his needs and circumstances.

    What precautions do I need to take after my child's cleft palate repair?
    You should give your child soft foods, using the side of a soft-tipped baby spoon. After each feeding, be sure to rinse your child's mouth with water. Rinsing is very important, especially for the first 10 to 14 days after surgery. Ask your nurse about using a special syringe for rinsing.

    Will my child experience any side effects after the surgical repair?
    Your child may regurgitate some food and liquid through her nose for up to three months after the operation. This is normal. It takes time for the swelling to diminish and for the muscles in the palate to begin working properly. You'll be given further post-operative instructions when your child is discharged.

    As my child gets older, will he need another operation on his palate?
    Approximately 5 to 15 percent of all children who have undergone a cleft palate repair will need a second operation to correct “nasal”-sounding speech. The most common procedure used to fix this problem is called a pharyngeal flap, which is performed when the child is about 5 years old. You can read more about this surgery in the “Managing speech and language issues” section of this page.


    Managing feeding issues

    How do I feed my newborn with a cleft lip/cleft palate?
    Your baby's ability to feed, whether by breast or bottle, is determined by the extent or severity of her cleft lip/cleft palate. Right after birth, your cleft team nurse will determine the type of feeding method that's best for you and your baby.

    • If your baby has a cleft palate that only involves her soft palate, a nipple shield might be helpful in assisting with breastfeeding.

    • If your baby is working too hard to suckle, or if her cleft palate involves the hard palate, she may need a device such as a VentAire® feeder with a small cross cut in the silicone nipple.

    • If your baby has both a cleft lip and a cleft palate, she will most likely need a special feeding device. A Haberman® feeder is usually recommended, because it allows milk to be pumped in time with the baby's suck-swallow sequence. A Ross® nipple might be added to help deliver the flow of milk.

    How much milk does my baby need?
    Your cleft team nurse will help you determine the total volume of milk your infant needs to consume over a 24-hour period.

    • Feedings should last no more than 30 minutes; prolonged feeding can exhaust you and the baby, and infants spend calories very quickly.

    • However, it's important to feed your baby every 3 to 4 hours. Never let him go more than four hours without a feeding—unless he is close to meeting his volume quota for the 24-hour period.

    • Weigh your infant once per week. If he is not gaining more than one ounce per day, you should talk to your pediatrician about increasing the caloric content of the milk.

    How do I keep my baby sucking sufficiently?

    • Establishing a “rhythm” with your infant is paramount: Watch for your infant's “hunger cues” and do not interrupt a sucking pattern.
    • When the sucking stops, burp your infant while holding him upright and supporting his lower jaw.

    Is there a positioning technique for bottle feeding?
    Yes: Wrap your infant, enclosing the hands, in a blanket. This is called “swaddling.”

    • Sit in a comfortable chair, like a rocking chair or a “glider” chair, with a footstool.

    • Hold the baby upright in your arms or hold his head from behind.

    • Relax your arms, and place the nipple gently into the baby's mouth.

    • Lay the nipple on top of the baby's tongue.

    • Rotate your arm so that the underside of your hand is holding the bottle. Put your ring finger under the baby's chin.

    • With firm pressure, keep your ring finger in place so as the baby suckles you feel pressure against your finger. Your infant should feel comfortable while suckling (i.e., no straining or squirming to access the nipple or to swallow).

    • If your infant has both a cleft lip and a cleft palate, position the nipple so that his  upper and lower gums connect with it.

    • With gentle pressure under the chin, push up to start your baby's sucking.

    • Maintain this pressure. If, after a minute of sucking, there is little flow of milk, rotate the nipple to a longer line or compress the nipple with gentle pressure in rhythm with your baby's suck-swallow reflex.

    • Watch for cues that your infant is either satiated or needs burping (“bubbling”). 

    What should my baby and I do right after feeding?

    • Keep the baby upright for about 20 minutes, either by holding him or by placing him in a seat.

    • If you place your baby in a bed, slightly turn his body to the side with a wedge.

    • Elevate the bed by 20 degrees: his chest should be higher than his stomach.

    • An infant with a cleft palate may exhibit some esophageal and nasopharyngeal reflux(milk coming out through the nose), or he might regurgitate shortly after feeding has ended. You should always keep a suction bulb handy for these instances.

    • Record the time, length and amount of feeding.

    How can I adjust the feeding process if my baby is not gaining sufficient weight?
    If your baby is gaining less than one ounce per day, calories in the formula or breast milk need to be increased. This can be accomplished by concentrating the formula or adding powdered milk to your breast milk. Your pediatrician and cleft team nurse will help you with these steps.

    If a particular feeding device is not working for you or for your infant, your cleft team nurse will give you alternative feeders to try. If your baby's weight gain is insufficient even after increasing the calories per volume, you may need to consult with a pediatric gastrointestinal/nutrition specialist.

    Are there ways to supplement or replace oral feeding?
    When oral feedings are not sufficient for your baby, there are other methods that can be used to deliver the needed calories:

    • Your child's treatment team may recommend a naso-gastric tube, which is passed through the baby's nostril into his stomach to provide a direct source of nutrients. However, this is only a temporary solution until the baby is able to consume all necessary calories by mouth.

    • If your baby is having trouble with both eating and breathing, your doctor may recommend a gastrostomy tube, which is placed directly into his stomach from the outside of the belly under general anesthesia. The food source is delivered to the stomach through a syringe or mechanical device. A gastronomy tube is normally used only until the child is old enough to eat by mouth.

    How do I feed my child in preparation for her cleft palate repair?
    Some—but not all—babies are introduced to cup feeding before surgical repair of their cleft palate. It will take several months for your baby to get used to cup feeding, so it's good to start early (around 6 months of age).

    • Begin by using the cup to replace one feeding a day, and gradually increase the number of cup feedings.

    • Over several weeks, you should be able to completely transition to a cup.

    • Begin spoon feedings, using a soft-tipped spoon, when your baby is 6 months old. As directed by your pediatrician, you may give her cereal, fruits, vegetables and other foods with the spoon. You may also use the spoon to feed her liquids.

    How do I feed my child after her cleft palate repair?
    Your cleft team nurse will review feeding instructions at the time of your baby's cleft palate repair.

    • In some instances, your child may return to using a cleft feeder. If the cleft feeder is not appropriate for your child, a “sippy cup” will be introduced prior to the surgery.

    • Your child should use a cup that either has a very short spout, or doesn't have a spout at all. Your nurse will show you the type of cup that's best for your child.

    • Remember that you will need to use a cup for all feedings during the first 10 to 14 days after your child's cleft palate repair.

    • If your child is having difficulty getting enough fluid with the cup, it is permissible to use a silicone nipple with a large cross cut. This can be accomplished by using the Haberman® bottle or a standard soft silicone nipple. It may instead be necessary to feed your child with the Ross® nipple.

    Ten days after surgery, you can begin to give your child soft foods with the side of a soft-tipped baby spoon. After each feeding, be sure to rinse your child's mouth with a small amount of water from a cup or special syringe.

    How do I ensure that my baby is nurtured as well as nourished?
    It's important to remember that your infant is a normal baby who just happens to have an anatomic defect that can be surgically corrected. Once you feel comfortable with the feeding method your cleft team nurse teaches you, you will be more at ease with nurturing. You will see your baby thriving, smiling and responding to your touch.

    It is very important that at least three people you trust with supporting and assisting you in feeding your baby learn and feel comfortable with the chosen feeding method, too. Your infant can sense when someone is confident with feedings, and will be more relaxed as a result.

    Managing hearing difficulties

    Will my child have difficulty hearing?
    Many—but not all—children born with a cleft palate experience temporary hearing loss because of fluid in the middle ear and recurring ear infections. This hearing loss may last for a short time, or it can go on for a number of months.

    Sin e speech and language development are influenced by a child's ability to hear well, any hearing problems he has can also cause speech difficulties. Learn more about treating these complications in the “Managing speech and language issues” section of this page. 

    How and when will my child's hearing be tested?
    Your child will have his first hearing test early in life, and again prior to surgery to repair his cleft palate. His age and developmental level will determine which hearing test method will be used:

    • Very young infants (newborn to 6 months) undergo a special hearing evaluation called an Auditory Brainstem Response Evaluation (ABRE). This test is performed while the child is asleep.

    • Older infants (at a developmental level of 6 months or more) can undergo a hearing evaluation with behavioral audiometric test methods. This type of test is conducted while the child is awake and able to participate.

    • Children between the ages of 7 months and 2 ½ years typically undergo a Visual Reinforcement Audiometry (VRA) hearing test.

    • A child who is between 2 ½ and 5 years old should have a hearing test by conventional audiometric testing methods (also known as the “hand-raise response” test).

    • Tympanometry testing is often performed at the time of hearing evaluation. This is a test of middle ear function, and can also be used to check the function of ear tubes and to detect the presence of an eardrum perforation.

    Your child's audiologist (hearing specialist) will assess his hearing every 6 to 12 months, and will work closely with an otorhinolaryngologist (ORL)—an ear/nose/throat specialist. Before his cleft palate repair, your child will be seen by the ORL specialist to discuss his ear function and any special care he may need.

    How is persistent middle ear fluid and associated hearing loss treated?
    Because the tube that connects the middle ear to the throat (called the Eustachian tube) does not drain normally in an infant with a cleft palate, fluid collects in the baby's middle ear space. This fluid—also known as effusion—is present in virtually every baby with an unrepaired cleft palate who is younger than 1 year of age. The accompanying hearing loss can cause difficulties with speech, language and cognitive development as the child grows.

    Persistent fluid in the middle ear is also associated with a recurring infection called otitis media. Infants with a cleft palate, middle ear effusion and hearing loss will require an operation to remove the fluid and to insert a ventilation tube. This operation is performed under general anesthesia, usually at the same time as the cleft palate repair.

    The ventilation tubes will stay in place for 9 to 12 months, and your child's ORL specialist will check them every 6 months. The tubes usually fall out on their own, and do not require another surgery for removal.

    As many as half of all infants who undergo cleft palate repair will need a repeat insertion of ventilation tubes. Although they unfortunately carry a risk of eardrum scarring and perforation, the tubes are necessary to ensure normal long-term hearing, and are crucial to healthy speech and language development.

    Managing speech/language issues

    How does the palate affect speech?
    The hard and soft palate separate the mouth from the nose. When we breathe, the air flows in and out of our lungs through the nose and throat. When we talk, the muscles in the soft palate move the palate to the back of the throat to seal off the nose (this is called the velopharyngeal valve). This sealing allows air to flow through the mouth alone when we speak; there are only three speech sounds in the English language (“m,” “n” and “ng”) that are made through the nose instead.

    Will my child experience difficulty speaking?
    A cleft lip alone does not cause speech problems. A child born with a cleft palate, however, is unable to make normal speech sounds—other than those three nasal sounds rendered through the nose—until the defect is repaired. Some children with a cleft palate experience both speech and language delays. These may be related to the temporary hearing loss associated with the cleft palate and middle ear fluid (see the “Managing hearing difficulties” section of this page for more information). Children may also exhibit difficulty with speech if their palate is not effectively closing off the nose from the mouth while they are speaking.

    The good news is that most children will acquire speech and language skills at a normal pace after their cleft palates are repaired, and once middle ear tubes are placed for drainage.

    How will my child's speech change after repair of his cleft palate?
    Right after his cleft palate repair, your child's sounds may decrease in frequency and variety. It can take up to 6 weeks for him to resume his normal vocalization.

    A speech pathologist will work with you to design home activities that can help your child build and maintain normal speech and language capabilities. For example, you should encourage him to make “lip” sounds (“p” and “b”) and “front of the tongue” sounds (“t”, “r” and “d.”) You can do this with playful “lip-popping” games—like mimicking a fish—and tongue-clicking games—like mimicking a horse's trot. One of our former patients even reports practicing with peanut butter in his mouth!

    Sounds made in the throat, such as “uh oh,” and animal roaring sounds should be discouraged, as they can lead to poor speech habits in a child recovering from cleft palate repair.

    Will my child need speech therapy?
    Speech therapy teaches children to make and express sounds in a normal manner. The speech pathologist on your child's cleft treatment team will determine whether she needs this type of therapy. If so, the pathologist will usually recommend treatment in either an early speech intervention program or a community school program.

    Can my child have her adenoids or tonsils removed if she needs to?
    The adenoids—clumps of tissue located at the rear of the nasal cavity—naturally assist a child in sealing off her nose during speech. While many children have their adenoids removed at some point, a child with a cleft palate should only undergo adenoid removal after consultation with her cleft treatment team.

    By contrast, the tonsils do not play a role in sealing off the nose from the mouth, and can be removed without issue if there is a medical need to do so.

    What is a pharyngeal flap, and how can it address speech problems related to a cleft palate?
    Between 5 and 15 percent of children who undergo cleft palate repair remain unable to sufficiently seal off the nose during speech. As a result, their speech sounds overly nasal—this is also known as velopharyngeal insufficiency (VPI).

    A child with this condition can benefit from another operation, called a pharyngeal flap, which repositions some tissue from the soft palate at the back of the throat in order to stop some of the escaping air. This surgery is performed when the child is about 5 years old, after a thorough evaluation by a speech pathologist, otolaryngologist and plastic surgeon.

    How often should my child's speech capabilities be evaluated?
    Your child's speech should be evaluated every 6 months until the age of 3, and on a yearly basis thereafter. You are encouraged to contact your team's speech pathologist at any time if you have questions or concerns.

    Managing dental and orthodontic issues

    Will my child's cleft lip/cleft palate affect his teeth?
    Your child's first tooth (usually the lower incisor) may appear between 4 and 14 months of age. By age 3, all children usually have their primary (baby) teeth.

    A child with cleft lip and/or cleft palate may have poorly formed enamel (outer tooth layer) on some of his teeth, especially those near the cleft. Teeth in this region may also be out of alignment, partially erupted and, therefore, difficult to clean. All of these factors make children with a cleft lip/cleft palate more susceptible to developing cavities.

    How should I take care of my child's teeth?

    • Brush your child's teeth at least twice a day to minimize the likelihood of cavities.

    • Avoid foods with a lot of sugars and starches. Frequent snacking is especially harmful to the teeth, since the bacteria in dental plaque produce cavity-causing acids each time food enters the mouth.

    • Fluoride, whether through the water supply or through prescribed supplements, has been proven to reduce the amount of decay in the baby teeth and permanent teeth. The greatest benefits from fluoride occur between 6 months and 8 years of age. Therefore, a child with a cleft lip/cleft palate should be placed on the optimal fluoride dosage early in life.

    When should my child see the dentist for the first time?
    If your child has a complete cleft lip/cleft palate and has needed a dental appliance, you probably have already met our dental team! Your child should visit a pediatric dentist between the ages of 12 and 18 months, or earlier if you have any questions or concerns.

    What dental issues should I expect as my child gets older?
    As your child grows and his teeth and bite develop, your pediatric dentist and orthodontist will periodically evaluate the need for treatment.

    • Common problems include missing, malformed or extra teeth in the region of the cleft.

    • Absent teeth may need to be replaced artificially or by moving teeth into the space with orthodontics.

    • A dental implant can be inserted if a tooth is missing. This may be an option for your child once his dental growth is complete.

    Will my child need orthodontic therapy?
    Since a cleft palate almost always affects a child's bite, most children with the condition will need at least one phase of orthodontic treatment. The decision to receive orthodontic care should be made by your child's pediatric dentist, or by an orthodontist who has specialized expertise in treating children with cleft lip/cleft palate.

    Phase I orthodontics
    Phase I orthodontics are used when the child still has some of his “baby teeth” (typically between the ages of 7 and 10). During Phase I for a child with a cleft lip/cleft palate, an orthodontist uses an appliance to widen the palate in preparation for the alveolar bone graft procedure.

    Alveolar bone graft procedure
    The alveolar bone graft procedure is usually performed between the ages of 8 and 10.

    During the procedure, the bone is harvested from the child's hip region; it is then used to connect the soft tissue and bony gap in the upper jaw. The bone graft heals and solidifies to provide support for the surrounding teeth and/or a dental implant. Most children can resume full physical activity, including sports, within two to three months.

    Minor revisions of the lip and nose also can be done during the bone graft operation.

    Phase II orthodontics
    A second phase of orthodontics uses braces to properly align the permanent teeth. Braces are usually worn during the early teen years, and help to:

    • deal with eruption of the canine teeth
    • further align all teeth
    • resolve tooth crowding

    Some children may also be fitted with a reverse-pull headgearat this time. This device corrects an underbite(abnormal protrusion of the lower jaw, crossing over some of the top teeth), which is a fairly common complication in children with a cleft palate.

    Phase III orthodontics
    Some patients may need to continue wearing braces and/or a headgear throughout late adolescence and into early adulthood.

    Long-term monitoring and follow-up

    The follow-up care your child will need depends on the extent of his cleft lip and/or cleft palate. Here in our Cleft Lip and Palate Program, we see patients as frequently as every six months to once a year, from infancy all the way through adolescence.

    Your treatment team will develop a follow-up schedule that works best for you, your child and your family.

  • At Children’s Hospital Boston, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside. Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world.

    In particular, our plastic and oral surgery researchers are yielding crucial insights into the causes and development of cleft lip/cleft palate, paving the way for the promising new treatments.

    • Children’s plastic surgeon-in-chief, John G. Meara, MD, DMD, MBA, is examining quality, safety, cost and comparative effectiveness of treatments for cleft lip/cleft palate and other craniofacial anomalies.

    • Children’s oral surgeon-in-chief, Bonnie Padwa, DMD, MD, is studying the facial growth of children with cleft lip/cleft palate, as well as surgical outcomes for procedures to repair these defects.

    • Children’s plastic surgeon and Vascular Anomalies Center co-director John B. Mulliken, MD, is investigating the genetic underpinnings of cleft lip/cleft palate. He is also taking a closer look at the anthropometry—the science of individual humans’ size, form and functional capacity—of children with the condition.

    Learn more about plastic and oral surgery research at Children’s.

    Clinical trials

    Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in pediatric medicine. A significant part of our success comes from our commitment to research—and to advancing the frontiers of pediatric health care by conducting clinical trials.

    Children’s coordinates hundreds of clinical trials at any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular condition
    • taking a closer look at the causes and progression of specific diseases 

    Children’s is involved in several multi-site clinical trials and studies. While children must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in one. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition 

    Taking part in a clinical trial at Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time. 

  • Jon, a writer in the Children’s Marketing Department, is a former patient in the Children’s Cleft Lip and Palate Program. In his own words, here is his story:

    "A smile is one of the universal signs of happiness and joy, and thanks to Children’s Hospital Boston, I can smile just as well as anyone else.  Behind my smile is over a decade of care I have received at Children’s.

    An important part of the care was the communication. I was always a curious child, and I would ask about every little tool I saw and asked about every step of each procedure. Whether it was John Mulliken, MD, or Richard Bruun, DDS, of the Orthodontic Program who was treating me, I never felt talked down to, and always received thorough and clear answers—which helped me psychologically prepare for my surgery and recovery.

    My journey began in Vietnam, where I was born.  Partially due to my cleft lip and palate and the Third World environment I was born in, I was malnourished when I came over to the United States. Quickly, that changed: According to my adoptive parents, spaghetti was my favorite meal when I arrived and I ate plenty of it (I still do).  Before I had my surgeries at Children’s, I had to have my spaghetti chopped into pieces because it would go through my nose. As unimportant as that may seem, as a little kid, there’s nothing more fun than twirling spaghetti. Sometimes when I drank milk and laughed too hard, milk would come out, which I found humorous!

    But it was not always fun and games.  I had to go through many years and hours of speech therapy, had to wait to chew gum since I had braces until I was 18 years old and endured the pain of surgery while missing a few youth soccer seasons.

    Through all of those challenges, however, I have learned to be patient and grateful for all I have, and how lucky I was to be treated at Children’s."

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