Cleft Lip and Cleft Palate
What is cleft lip and palate?
The term "cleft" means a split or a divide. Children can be born with a variety of cleft types and with variable severity. In a cleft lip there is a separation of the sides of the upper lip. This separation often includes the bones of the upper jaw and/or gum. A cleft palate is an opening in the roof of the mouth (called the "hard palate" and "soft palate") in which the two sides of the palate did not join while your baby was developing in utero. Cleft lip and cleft palate can occur on one side (unilateral) or on both sides (bilateral). Because the lip and the palate develop separately, it is possible to have a cleft lip, a cleft palate, or both.
Another type of cleft is called "submucous cleft palate." In a submucous cleft palate, the cleft of the muscles and/or bone for the roof of the mouth is covered by a mucous membrane, making it difficult to see the presence of the cleft when looking in the mouth. Some children will show signs of a submucous cleft palate (e.g., bifid uvula, midline groove of the hard palate, or nasal sounding speech), while others may show no signs. Therefore, the treatment of submucous cleft palate is quite variable.
How is a cleft palate diagnosed?
Usually, a doctor will see a cleft lip and/or palate at birth. Sometimes a cleft lip (and, rarely, a cleft palate) can be seen before birth on an ultrasound. If the cleft palate is not easy to see, it may not be noticed until your baby has trouble feeding. Your baby may have a weak suck and take a long time to feed. Milk may come out of your child's nose during feeding. Submucous clefts may be diagnosed soon after birth due to your baby's poor feeding skills. However, more often, submucous cleft palate is not diagnosed unless a child has abnormal nasal speech. A submucous cleft palate may be identified by the presence of a bifid (i.e., split) uvula (the small finger-like projection of tissue that hangs down from the soft palate). In some children, the palate looks normal, and special tests are used in diagnosing a submucous cleft palate.
What causes a cleft?
It is estimated that cleft lip with or without cleft palate affects 1 in 940 births in the United States, presenting in approximately 4,437 cases each year. Cleft lip and/or palate that occurs with no other major defects is the most common birth defect in the United States. Cleft lip and cleft palate occur very early in pregnancy. Many possible causes are being investigated, but no single cause has been identified. The majority of clefts appear to be due to a combination of genetics and environmental factors. Other cases appear to be "isolated incidents," meaning there is no family history or indication of other health problems. The risks of recurrence of a cleft condition are dependent upon many factors, including the number of affected persons in the family, the closeness of affected relatives, the race and sex of all affected persons, and the severity of the clefts. The Centers for Disease Control and Prevention and research groups have identified several risk factors that can increase the chance of having a baby with a cleft. These include genetic factors, as well as smoking during pregnancy, diabetes, substance abuse, certain medicines (such as drugs for epilepsy), and poor prenatal health care.
Who treats a cleft palate and what is team care?
A child born with a cleft frequently requires several different types of services, all of which need to be provided in a coordinated manner over a period of years. These services are best provided by a cleft palate/craniofacial team, which is a multidisciplinary team of specialists who work together to provide the best possible care for your child. A cleft palate/craniofacial team should include, at a minimum, a plastic surgeon, an orthodontist, and a speech-language pathologist. Additional providers—such as pediatricians, nurses, ear-nose and throat doctors (ENT), audiologists, psychologists, social workers, and nutritionists—may also be a part of your child's care team. The surgeon will close your child's cleft lip and/or palate, usually before 1 year of age. The dentist and orthodontist help straighten your child's teeth and align the jaw. The speech-language pathologist or team nurse specialist will assess your child's feeding during infancy and the speech-language pathologist will monitor your child's speech and language development.
How do I find team care in my area?
The American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF) website maintains a listing of teams, by state, from all over the United States. These teams have met certain standards for team care. A number of international teams also are listed on this site. Visit the team care resources page on the ACPA website. You can also call the Cleftline at 1-800-24cleft to locate a team and speech-language pathologist experienced in working with cleft palate speech disorders.
How does a cleft palate affect feeding?
Feeding: Babies with only a cleft lip are likely able to breastfeed and/or use a typical bottle. Babies with a cleft of the palate often require special bottles and nipples and likely will work with a cleft palate feeding specialist (often, the team speech-language pathologist) to ensure adequate feeding method and nutrition. A lactation specialist may also be consulted to monitor successful feedings and growth. The craniofacial speech-language pathologist, occupational therapist, nurse, and lactation specialist can assist in choosing the best bottle for your child. See Feeding and Swallowing Disorders (Dysphagia) in Children for additional information.
How does a cleft palate affect speech?
Speech: If a child has only a cleft lip, speech development should be typical or very close to typical. Children with cleft lip and palate or cleft palate only often need speech intervention to monitor speech development and to treat any speech delays or errors that they might develop. Some children will require speech therapy. Others will require further surgery. And others may require both. Some craniofacial teams may incorporate a temporary "speech appliance" in addition to speech therapy. These are all decisions guided by your child's cleft palate craniofacial team.
What is Velopharyngeal Insufficiency (VPI)?
In order to produce speech, the soft portion of the palate (called "soft palate") needs to elevate and make contact to the back of the throat. This closes off the mouth (the oral cavity) from the nasal cavity so that sounds can come out of your mouth and not your nose. When we produce nasal sounds, such as "m" and "n," the soft palate stays down so sound can travel out the nose to produce the nasal sound. Velopharyngeal Insufficiency (VPI) is when the soft portion of the palate does not reach the back of the throat to produce normal sounding speech. This results in unwanted escape of air or sound through the nose during speech. A child who has VPI may have nasal sounding speech. Even after surgery to close the cleft in the palate, approximately 20% of children will continue to have VPI and may require another surgery and/or speech therapy. The team speech-language pathologist will determine if VPI is present and recommend appropriate management for your child. There are several other terms that are used synonymously with VPI. These include velopharyngeal inadequacy and velopharyngeal incompetency. Some teams use the term velopharyngeal dysfunction (VPD) to include any problem with velopharyngeal function for speech.
If my child does have speech problems, how are they treated?
If your child's speech problems are due to incorrect articulation (how sounds are formed by correct placement of the tongue and lips during speech) speech therapy is the appropriate treatment. Speech therapy can help your child learn how to use the "articulators" (tongue or lips) to make speech sounds correctly.
If the speech-language pathologist determines that your child's speech problems are related to VPI or other problems with oral structures (e.g., teeth, how the teeth come together, or a "fistula"), speech therapy may not be an appropriate treatment. Surgical or orthodontic intervention is generally required to correct these anatomical differences. Often, children may need both speech therapy and additional surgery to create normal sounding speech.
It is important to discuss treatment of your child's speech problems with the cleft palate/craniofacial team speech-language pathologist (SLP) who has special knowledge and skills to accurately diagnose and treat or monitor treatment of your child's speech problems. The team SLP can also work collaboratively with the school-based SLP or other community SLP who may be treating your child to provide coordinated speech care.
Does a cleft palate affect hearing?
In children born with only a cleft lip, hearing problems occur no more frequently than in children born without clefts. However, problems with fluid in the ears (middle ear effusion) and related infection (otitis media) associated with reduced hearing ability are very common in children with a cleft palate, with or without cleft lip. These problems require management by ear (ENT) and hearing (audiologist) specialists. Over time, repeated middle ear fluid and repeated infections can increase the risk of permanent hearing loss. It is important to monitor hearing, because even children with temporary hearing loss can have difficulty learning speech and language. Regular visits with an ENT and an audiologist associated with a cleft palate/craniofacial team are essential to the monitoring and health of your child's hearing.
Does every child with a cleft palate need speech therapy?
Every child with a cleft palate should be evaluated and monitored by a cleft palate/craniofacial team speech-language pathologist on a consistent basis throughout the child's development and especially into the early school-age years. Not all children with cleft palate will need speech therapy. The cleft palate/craniofacial team speech-language pathologist will monitor your child's development and recommend on-going speech therapy, when and if appropriate.
Where can I find more information about clefts?
- The American Cleft Palate-Craniofacial Association (ACPA) is "an international non-profit medical society of health care professionals who treat and/or perform research on birth defects of the head and face." The ACPA website includes information about team care, education opportunities, and a host of resources related to cleft palate-craniofacial care.
- The Cleft Palate Foundation (CPF) has a website designed for parents, patients, and health care professionals. A multitude of resources can be found on topics such as breastfeeding, insurance company issues, financial assistance, and challenges during school-age, teenage, and adult years. Additionally, a complete listing of cleft palate teams throughout the United States can be found on this website.