Oral-facial clefts are birth defects in which the tissues of the mouth or lip don't form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it the one of the most common major birth defects. Clefts occur more often in children of Asian, Latino, or Native American descent.
The good news is that both cleft lip and cleft palate are treatable birth defects. Most kids who are born with these conditions can have reconstructive surgery within the first 12 to 18 months of life to correct the defect and significantly improve facial appearance.
What Is Oral Clefting?
Oral clefting occurs when the tissues of the lip and/or palate of a fetus don't grow together early in pregnancy. Children with clefts often don't have enough tissue in their mouths, and the tissue they do have isn't fused together properly to form the roof of their mouths.
A cleft lip appears as a narrow opening or gap in the skin of the upper lip that extends all the way to the base of the nose. A cleft palate is an opening between the roof of the mouth and the nasal cavity. Some children have clefts that extend through both the front and rear part of the palates, while others have only partial clefting.
There are generally three different kinds of clefts:
cleft lip without a cleft palate
cleft palate without a cleft lip
cleft lip and cleft palate together
In addition, clefts can occur on one side of the mouth (unilateral clefting) or on both sides of the mouth (bilateral clefting).
More boys than girls have a cleft lip, while more girls have cleft palate without a cleft lip.
Because clefting causes specific visible symptoms, it's easy to diagnose. It can be detected through a prenatal ultrasound. If the clefting has not been detected prior to the baby's birth, it's identified immediately afterward.
What Causes Oral Clefting?
Doctors don't know exactly why a baby develops cleft lip or cleft palate, but believe it may be a combination of genetic (inherited) and environmental factors (such as certain drugs, illnesses, and the use of alcohol or tobacco while a woman is pregnant). The risk may be higher for kids whose sibling or parents have a cleft or who have a history of clefting in their families. Both mothers and fathers can pass on a gene or genes that cause cleft palate or cleft lip.
Complications Related to Oral Clefting
A child with a cleft lip or palate tends to be more susceptible to colds, hearing loss, and speech defects. Dental problems - such as missing, extra, malformed, or displaced teeth, and cavities - also are common in children born with cleft palate.
Many children with clefts are especially vulnerable to ear infections because their eustachian tubes don't drain fluid properly from the middle ear into the throat. Fluid accumulates, pressure builds in the ears, and infection may set in. For this reason, a child with cleft lip or palate may have special tubes surgically inserted into his or her ears at the time of the first reconstructive surgery.
Feeding can be another complication for an infant with a cleft lip or palate. A cleft lip can make it more difficult for a child to suck on a nipple, while a cleft palate may cause formula or breast milk to be accidentally taken up into the nasal cavity. Special nipples and other devices can help make feeding easier; you will probably be given information on how to use them and where to buy them before you take your baby home from the hospital. And in some cases, a child with a cleft lip or palate may need to wear a prosthetic palate called an obturator to help him or her eat properly.
If you're experiencing problems with feeding, your doctor may be able to offer other suggestions or feeding aids to help you and your baby.
Treating Clefts
The good news is that there have been many medical advancements in the treatment of oral clefting. Reconstructive surgery can repair cleft lips and palates, and in severe cases, plastic surgery can address specific appearance-related concerns.
A child with oral clefting will need to see a variety of specialists who will work together as a team to treat the condition. Treatment usually begins in the first few months of an infant's life, depending on the health of the infant and the extent of the cleft.
Members of a child's cleft lip and palate treatment team usually include:
a geneticist
a plastic surgeon
an ear, nose, and throat physician (otolaryngologist)
an oral surgeon
an orthodontist
a dentist
a speech pathologist (often called a speech therapist)
an audiologist
a nurse coordinator
a social worker and/or psychologist
The team specialists will evaluate your child's progress regularly, examining your child's hearing, speech, nutrition, teeth, and emotional state. They will share their recommendations with you, and can forward their evaluation to your child's school, and any speech therapists that your child may be working with.
In addition to treating your child's cleft, the specialists will work with your child on any issues related to feeding, social problems, speech, and how you approach the condition with your child. They'll provide feedback and recommendations to help you through the phases of your child's growth and treatment.
Surgery for Oral Clefting
Surgery is usually performed during the first 12 to 18 months to repair cleft lip and/or cleft palate. Both types of surgery are performed in the hospital under general anesthesia.
Cleft lip often requires only one reconstructive surgery, especially if the cleft is unilateral. The surgeon will make an incision on each side of the cleft from the lip to the nostril. The two sides of the lip are then sutured together. Bilateral cleft lips may be repaired in two surgeries, about a month apart, and usually requires a short hospital stay.
Cleft palate surgery involves drawing tissue from either side of the mouth to rebuild the palate. It requires 2 or 3 nights in the hospital, with the first night spent in the intensive care unit. The initial surgery is intended to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help the child's teeth and facial bones develop properly. In addition, this functional palate will help your child's speech development and feeding abilities.
The necessity for more operations depends on the skill of the surgeon as well as the severity of the cleft, its shape, and the thickness of available tissue that can be used to create the palate. Some children with a cleft palate require more surgeries to help improve their speech. Additional surgeries may also improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and realign the jaw. Subsequent surgeries are usually scheduled at least 6 months apart to allow a child time to heal and to reduce the chances of serious scarring.
It's a good idea to meet regularly with your child's plastic surgeon to determine what's most appropriate in your child's case. Final repairs of the scars left by the initial surgery may not be performed until adolescence, when facial structure is more fully developed. Surgery is designed to aid in normalizing function and cosmetic appearance so that the child will have as few difficulties as possible.
Dental Care and Orthodontia
Children with oral clefting often undergo dental and orthodontic treatment to help align the teeth and take care of any gaps that exist because of the cleft.
Routine dental care may get lost in the midst of these major procedures, but healthy teeth are critical for a child with clefting because they're needed for proper speech.
A child with oral clefting generally needs the same dental care as other children - regular brushing supplemented with flossing once the child's 6-year molars come in. Depending on the shape of your child's mouth and teeth, your child's dentist may recommend a toothette, a soft sponge that contains mouthwash, rather than a toothbrush. As your child grows, you may be able to switch to a soft children's toothbrush. The key is to make sure that your child brushes regularly and well.
Children with cleft palate often have an alveolar ridge defect. The alveolus is the bony upper gum that contains teeth, and defects can:
displace, tip, or rotate permanent teeth
prevent permanent teeth from appearing
prevent the alveolar ridge from forming
These problems can be fixed by grafting bone matter onto the alveolus, which allows the placement of your child's teeth to be corrected orthodontically.
Orthodontic treatment usually involves a number of phases, with the first phase beginning as the permanent teeth start to come in. In the first phase, which is called an orthopalatal expansion, the upper dental arch is rounded out and the width of the upper jaw is increased. A device called an expander is placed inside the child's mouth. The widening of the jaw may be followed by a bone graft in the alveolus.
Your child's orthodontist may wait until the remainder of your child's permanent teeth come in before beginning the second phase of orthodontic treatment. The second phase may involve removing extra teeth, adding dental implants if teeth are missing, or applying braces to straighten teeth.
In about 25% of children with a unilateral cleft lip and palate, the upper jaw growth does not keep up with the lower jaw growth. If this occurs, your child may need orthognathic surgery to align the teeth and help the upper jaw to develop.
For these children, phase-two orthodontics may include an operation called an osteotomy on the upper jaw that moves the upper jaw both forward and down. This usually requires another bone graft for stability.
Speech Therapy
A child with oral clefting may have trouble speaking - the clefting can make the voice nasal and difficult to understand. Some will find that surgery fixes the problem completely.
Catching speech problems early can be a key part of solving them. It's a good idea to take your child to a speech therapist between the ages of 18 months and 2 years. Many speech therapists like to talk with parents at least once during the child's first 6 months to provide an overview of the treatment and suggest specific language- and speech-stimulation games to play with the baby.
Shortly after the initial surgery is completed, the speech pathologist will see your child for a complete assessment. The therapist will evaluate your child's developing communication skills by assessing the number of sounds he or she makes and the actual words your child tries to use, and by observing interaction and play behavior.
This analysis helps determine what, if any, speech exercises your child needs and if further surgery is required. The speech pathologist will often continue to work with your child through additional surgeries. Many children who have clefts work with a speech therapist throughout their grade-school years.
Dealing With Emotional and Social Issues
Our society often focuses on people's appearances, and this can make childhood - and, especially, the teen years - very difficult for someone with a physical difference. Because a child with oral clefting has a prominent facial difference, your child may experience painful teasing, which can damage self-esteem. Part of the cleft palate and lip treatment team includes psychiatric and emotional support personnel.
Ways that you can support your child include:
Try not to focus on your child's cleft and do not allow it to define your child as an individual.
Create a warm and supportive home environment, where each person's individual worth is openly celebrated.
Let your child know that you feel good about who he or she is by showing acceptance and by not trying to make your child into your idea of who he or she should be.
Encourage your child to develop friendships with people from diverse backgrounds. The best way to do this is to lead by example and to be open to all people yourself.
Point out positive attributes in others that do not involve physical appearance.
Encourage autonomy by giving your child the freedom to make decisions and take appropriate risks, letting your child's own accomplishments lead to a sense of personal value. By providing opportunities for your child to make decisions early on - like picking out what clothes to wear - he or she can gain more confidence and the ability to make bigger decisions down the road.
You might also consider encouraging your child to present information about clefting to his or her class with a special presentation that you arrange with the teacher. Or perhaps your child would like you to talk to the class. This can be especially effective with young children.
If your child does experience teasing, encourage discussions about it and be a patient listener. Give your child the tools to confront the teasers by asking what he or she would like to say and then practicing those statements.
If your child seems to have ongoing self-esteem problems, you may want to consult with a child psychologist or social worker for support and information. Together with the members of your child's treatment team, you can help your child through tough times.
Also, it's important to keep the lines of communication open as your child approaches adolescence so that you can address any concerns he or she may have about appearance.
Reviewed by: Barbara P. Homeier, MD
Date reviewed: September 2005
Originally reviewed by: Louis E. Bartoshesky, MD, MPH
The good news is that both cleft lip and cleft palate are treatable birth defects. Most kids who are born with these conditions can have reconstructive surgery within the first 12 to 18 months of life to correct the defect and significantly improve facial appearance.
What Is Oral Clefting?
Oral clefting occurs when the tissues of the lip and/or palate of a fetus don't grow together early in pregnancy. Children with clefts often don't have enough tissue in their mouths, and the tissue they do have isn't fused together properly to form the roof of their mouths.
A cleft lip appears as a narrow opening or gap in the skin of the upper lip that extends all the way to the base of the nose. A cleft palate is an opening between the roof of the mouth and the nasal cavity. Some children have clefts that extend through both the front and rear part of the palates, while others have only partial clefting.
There are generally three different kinds of clefts:
cleft lip without a cleft palate
cleft palate without a cleft lip
cleft lip and cleft palate together
In addition, clefts can occur on one side of the mouth (unilateral clefting) or on both sides of the mouth (bilateral clefting).
More boys than girls have a cleft lip, while more girls have cleft palate without a cleft lip.
Because clefting causes specific visible symptoms, it's easy to diagnose. It can be detected through a prenatal ultrasound. If the clefting has not been detected prior to the baby's birth, it's identified immediately afterward.
What Causes Oral Clefting?
Doctors don't know exactly why a baby develops cleft lip or cleft palate, but believe it may be a combination of genetic (inherited) and environmental factors (such as certain drugs, illnesses, and the use of alcohol or tobacco while a woman is pregnant). The risk may be higher for kids whose sibling or parents have a cleft or who have a history of clefting in their families. Both mothers and fathers can pass on a gene or genes that cause cleft palate or cleft lip.
Complications Related to Oral Clefting
A child with a cleft lip or palate tends to be more susceptible to colds, hearing loss, and speech defects. Dental problems - such as missing, extra, malformed, or displaced teeth, and cavities - also are common in children born with cleft palate.
Many children with clefts are especially vulnerable to ear infections because their eustachian tubes don't drain fluid properly from the middle ear into the throat. Fluid accumulates, pressure builds in the ears, and infection may set in. For this reason, a child with cleft lip or palate may have special tubes surgically inserted into his or her ears at the time of the first reconstructive surgery.
Feeding can be another complication for an infant with a cleft lip or palate. A cleft lip can make it more difficult for a child to suck on a nipple, while a cleft palate may cause formula or breast milk to be accidentally taken up into the nasal cavity. Special nipples and other devices can help make feeding easier; you will probably be given information on how to use them and where to buy them before you take your baby home from the hospital. And in some cases, a child with a cleft lip or palate may need to wear a prosthetic palate called an obturator to help him or her eat properly.
If you're experiencing problems with feeding, your doctor may be able to offer other suggestions or feeding aids to help you and your baby.
Treating Clefts
The good news is that there have been many medical advancements in the treatment of oral clefting. Reconstructive surgery can repair cleft lips and palates, and in severe cases, plastic surgery can address specific appearance-related concerns.
A child with oral clefting will need to see a variety of specialists who will work together as a team to treat the condition. Treatment usually begins in the first few months of an infant's life, depending on the health of the infant and the extent of the cleft.
Members of a child's cleft lip and palate treatment team usually include:
a geneticist
a plastic surgeon
an ear, nose, and throat physician (otolaryngologist)
an oral surgeon
an orthodontist
a dentist
a speech pathologist (often called a speech therapist)
an audiologist
a nurse coordinator
a social worker and/or psychologist
The team specialists will evaluate your child's progress regularly, examining your child's hearing, speech, nutrition, teeth, and emotional state. They will share their recommendations with you, and can forward their evaluation to your child's school, and any speech therapists that your child may be working with.
In addition to treating your child's cleft, the specialists will work with your child on any issues related to feeding, social problems, speech, and how you approach the condition with your child. They'll provide feedback and recommendations to help you through the phases of your child's growth and treatment.
Surgery for Oral Clefting
Surgery is usually performed during the first 12 to 18 months to repair cleft lip and/or cleft palate. Both types of surgery are performed in the hospital under general anesthesia.
Cleft lip often requires only one reconstructive surgery, especially if the cleft is unilateral. The surgeon will make an incision on each side of the cleft from the lip to the nostril. The two sides of the lip are then sutured together. Bilateral cleft lips may be repaired in two surgeries, about a month apart, and usually requires a short hospital stay.
Cleft palate surgery involves drawing tissue from either side of the mouth to rebuild the palate. It requires 2 or 3 nights in the hospital, with the first night spent in the intensive care unit. The initial surgery is intended to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help the child's teeth and facial bones develop properly. In addition, this functional palate will help your child's speech development and feeding abilities.
The necessity for more operations depends on the skill of the surgeon as well as the severity of the cleft, its shape, and the thickness of available tissue that can be used to create the palate. Some children with a cleft palate require more surgeries to help improve their speech. Additional surgeries may also improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and realign the jaw. Subsequent surgeries are usually scheduled at least 6 months apart to allow a child time to heal and to reduce the chances of serious scarring.
It's a good idea to meet regularly with your child's plastic surgeon to determine what's most appropriate in your child's case. Final repairs of the scars left by the initial surgery may not be performed until adolescence, when facial structure is more fully developed. Surgery is designed to aid in normalizing function and cosmetic appearance so that the child will have as few difficulties as possible.
Dental Care and Orthodontia
Children with oral clefting often undergo dental and orthodontic treatment to help align the teeth and take care of any gaps that exist because of the cleft.
Routine dental care may get lost in the midst of these major procedures, but healthy teeth are critical for a child with clefting because they're needed for proper speech.
A child with oral clefting generally needs the same dental care as other children - regular brushing supplemented with flossing once the child's 6-year molars come in. Depending on the shape of your child's mouth and teeth, your child's dentist may recommend a toothette, a soft sponge that contains mouthwash, rather than a toothbrush. As your child grows, you may be able to switch to a soft children's toothbrush. The key is to make sure that your child brushes regularly and well.
Children with cleft palate often have an alveolar ridge defect. The alveolus is the bony upper gum that contains teeth, and defects can:
displace, tip, or rotate permanent teeth
prevent permanent teeth from appearing
prevent the alveolar ridge from forming
These problems can be fixed by grafting bone matter onto the alveolus, which allows the placement of your child's teeth to be corrected orthodontically.
Orthodontic treatment usually involves a number of phases, with the first phase beginning as the permanent teeth start to come in. In the first phase, which is called an orthopalatal expansion, the upper dental arch is rounded out and the width of the upper jaw is increased. A device called an expander is placed inside the child's mouth. The widening of the jaw may be followed by a bone graft in the alveolus.
Your child's orthodontist may wait until the remainder of your child's permanent teeth come in before beginning the second phase of orthodontic treatment. The second phase may involve removing extra teeth, adding dental implants if teeth are missing, or applying braces to straighten teeth.
In about 25% of children with a unilateral cleft lip and palate, the upper jaw growth does not keep up with the lower jaw growth. If this occurs, your child may need orthognathic surgery to align the teeth and help the upper jaw to develop.
For these children, phase-two orthodontics may include an operation called an osteotomy on the upper jaw that moves the upper jaw both forward and down. This usually requires another bone graft for stability.
Speech Therapy
A child with oral clefting may have trouble speaking - the clefting can make the voice nasal and difficult to understand. Some will find that surgery fixes the problem completely.
Catching speech problems early can be a key part of solving them. It's a good idea to take your child to a speech therapist between the ages of 18 months and 2 years. Many speech therapists like to talk with parents at least once during the child's first 6 months to provide an overview of the treatment and suggest specific language- and speech-stimulation games to play with the baby.
Shortly after the initial surgery is completed, the speech pathologist will see your child for a complete assessment. The therapist will evaluate your child's developing communication skills by assessing the number of sounds he or she makes and the actual words your child tries to use, and by observing interaction and play behavior.
This analysis helps determine what, if any, speech exercises your child needs and if further surgery is required. The speech pathologist will often continue to work with your child through additional surgeries. Many children who have clefts work with a speech therapist throughout their grade-school years.
Dealing With Emotional and Social Issues
Our society often focuses on people's appearances, and this can make childhood - and, especially, the teen years - very difficult for someone with a physical difference. Because a child with oral clefting has a prominent facial difference, your child may experience painful teasing, which can damage self-esteem. Part of the cleft palate and lip treatment team includes psychiatric and emotional support personnel.
Ways that you can support your child include:
Try not to focus on your child's cleft and do not allow it to define your child as an individual.
Create a warm and supportive home environment, where each person's individual worth is openly celebrated.
Let your child know that you feel good about who he or she is by showing acceptance and by not trying to make your child into your idea of who he or she should be.
Encourage your child to develop friendships with people from diverse backgrounds. The best way to do this is to lead by example and to be open to all people yourself.
Point out positive attributes in others that do not involve physical appearance.
Encourage autonomy by giving your child the freedom to make decisions and take appropriate risks, letting your child's own accomplishments lead to a sense of personal value. By providing opportunities for your child to make decisions early on - like picking out what clothes to wear - he or she can gain more confidence and the ability to make bigger decisions down the road.
You might also consider encouraging your child to present information about clefting to his or her class with a special presentation that you arrange with the teacher. Or perhaps your child would like you to talk to the class. This can be especially effective with young children.
If your child does experience teasing, encourage discussions about it and be a patient listener. Give your child the tools to confront the teasers by asking what he or she would like to say and then practicing those statements.
If your child seems to have ongoing self-esteem problems, you may want to consult with a child psychologist or social worker for support and information. Together with the members of your child's treatment team, you can help your child through tough times.
Also, it's important to keep the lines of communication open as your child approaches adolescence so that you can address any concerns he or she may have about appearance.
Reviewed by: Barbara P. Homeier, MD
Date reviewed: September 2005
Originally reviewed by: Louis E. Bartoshesky, MD, MPH
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