Cleft Lip and Cleft Palate

Related Terms

• Oral clefts
• Craniofacial defects
• Congenital anomalies
• Birth defects

Overview

In the earliest days of a baby’s development in the womb, the left and right sides of the lip and mouth develop separately and grow toward each other. The two sides meet in middle, where they fuse to form the complete lip and palate. There is normally a split or “cleft” between the right and left sides of the lip and the roof of the mouth, which forms the palate. Sometime during the 6th to 11th week of pregnancy, this tissue should come together to form the lips and mouth. If the tissue does not join, it can result in a gap in the upper lip, which is called a cleft lip, or an opening in the roof of the mouth, which is called a cleft palate. A baby may be born with only a cleft lip, only a cleft palate, or both.

Signs and Symptoms

Children with a cleft lip or a cleft palate may experience a range of health challenges depending on the size of the cleft:

• Problems eating and breathing
• Speech and language delays
• Ear infections
• Hearing loss
• Problems with their teeth

Related Health Effects

Cleft lip and cleft palate can occur in more than 400 syndromes, including Velocardiofacial, Waardenburg, and Down syndrome.

Note: Cleft lip and cleft palate are rare presentations in Waardenburg syndrome and Down syndrome.

Velocardiofacial syndrome, the most common syndrome associated with a cleft palate, often involves heart defects, problems fighting infection, low calcium levels, differences in kidney formation, and learning problems. Holoprosencephaly, a congenital anomaly of the brain, can sometimes include clefts of the lip and palate as well as other anomalies. Cleft lip and cleft palate may also appear as a feature of hemifacial microsomia, a condition in which one side of the face is smaller or underdeveloped.

Causes and Risk Factors

Both genetic and environmental risk factors can contribute to oral clefts.

• Genetics: A gene defect inherited from one or both parents prevents the lips and mouth from joining during development in the womb
• Genetic syndromes: A genetic syndrome is a condition caused by a genetic anomaly that’s associated with more than one symptom or defect
• Health and environment: Poor nutrition, use of tobacco or alcohol, or other environmental exposures in early pregnancy may increase risk

Diagnosis

A cleft lip may be diagnosed in pregnancy during a routine ultrasound or during the first examination at birth. It will usually be visible during a baby’s first examination, although some types of cleft palate are not easily visible and might not be diagnosed until later in life.

Because cleft lip and cleft palate may be part of genetic syndromes, a thorough medical examination and genetic counseling is often recommended to identify any other issues the child or family may have.

Treatment and Management

Treatment for children with cleft lip or cleft palate depends on the size of the cleft, the child’s age and needs, and whether there are additional problems related to a genetic syndrome.
A child with cleft lip or cleft palate is often referred to a team of experts that may include:

• Otolaryngologist (ear, nose, and throat doctor)
• Plastic surgeon
• Oral surgeon
• Pediatric dentist
• Orthodontist
• Pediatrician
• Audiologist
• Speech pathologist
• Nutritionist
• Psychologist or social worker

Surgery is often used to close the lip and/or palate. Cleft lip surgery is usually done before 12 months of age, and cleft palate surgery is done before 18 months of age. If there are other problems as they get older, a child may need comprehensive care from a medical team. Additional surgeries, dental and orthodontic care, and speech therapy are common interventions. With treatment, most children with cleft lip or cleft palate live healthy lives.

Living with Cleft Lip or Cleft Palate

If your baby has cleft lip or cleft palate, the following steps can help:

• Ask for advice from a pediatrician or certified lactation consultant, especially if your baby has problems nursing or drinking from a bottle. There are many ways to overcome feeding challenges.
• Ask questions. Talk to the experts who are treating your baby and ask them to explain what you do not understand.
• Ask for support from family, friends, and other parents of children with cleft lip and cleft palate.

Find Clinical Trials

Clinical trials uncover better ways to prevent, diagnose, treat, and understand diseases and conditions. To ensure results apply to everyone, volunteers of all ages, sexes, and backgrounds, including both healthy individuals and those with specific medical conditions, are needed. Find clinical trials on cleft lip or clinical trials on cleft palate.

Community Support

• American Cleft Palate Craniofacial Association (ACPA) is an association of individuals and healthcare providers who treat and/or perform research on oral cleft and craniofacial conditions. ACPA works to support the care of individuals affected by cleft and craniofacial conditions.
• FACES: The National Craniofacial Association is an organization serves children and adults throughout the United States with severe craniofacial differences resulting from congenital anomalies, injuries, or disease.

Note: This resource list is for informational purposes only. It is not comprehensive, and an organization’s inclusion does not constitute an endorsement by NIH.  

Research Information

The National Institutes of Health (NIH) is the largest public funder of biomedical research in the world. NIH invests most of its budget in medical research seeking to enhance life and to reduce illness and disability. NIH-funded research has led to breakthroughs and new treatments helping people live longer, healthier lives, and building the research foundation that drives discovery.  

NIH supports ongoing research on cleft lip and cleft palate. Researchers are working to understand the developmental processes that lead to clefting and how to prevent the condition or treat it more effectively. NIH is also a leader in research on congenital anomalies, their causes, prevention, treatments, and long-term health outcomes.

Find NIH-funded research projects using NIH RePORTER, a searchable database of current and past research projects supported by NIH and other federal agencies.