As the only cleft lip and palate program in Central Texas approved by the American Cleft Palate-Craniofacial Association, Dell Children’s takes a comprehensive approach to caring for kids with cleft lip and palate.
What Are Cleft Lip and Cleft Palate?
Cleft lip and cleft palate are birth abnormalities of the mouth and lip. Approximately 1 in 600 babies born in the US has some type of cleft. American Indian and Asian populations have the highest incidence of clefts. These abnormalities occur less frequently among African Americans. Cleft lip and cleft palate occur early in pregnancy when the sides of the lip and the roof of the mouth do not fuse together as they should. A child can have cleft lip, cleft palate or both. Cleft lip and cleft palate together are more common in boys. It is also important to know that most babies born with a cleft are otherwise healthy with no other birth abnormalities.
Cleft palate occurs when the roof of the mouth does not completely close, leaving an opening that can extend into the nasal cavity. The cleft may involve either side of the palate. It can extend from the front of the mouth (hard palate) to the throat (soft palate). Often the cleft will also include the lip. Cleft palate is not as noticeable as cleft lip because it is inside the mouth. It may be the only abnormality in the child, or it may be associated with cleft lip or other syndromes. In some cases, other family members have also had a cleft palate at birth.
Cleft lip is an abnormality in which the lip does not completely form during fetal development. The degree of the cleft lip can vary greatly, from mild (notching of the lip) to severe (large opening from the lip up through the nose). As a parent, it may be stressful to adjust to the obvious abnormality of the face, as it can be very noticeable.
There are different names given to the cleft lip according to its location and how much of the lip is involved.
A cleft on one side of the lip that does not extend into the nose is called unilateral incomplete.
A cleft on one side of the lip that extends into the nose is called unilateral complete.
A cleft that involves both sides of the lip and extends into and involves the nose is called bilateral complete.
Cleft lip and cleft palate may occur together in an infant, or separately. The degree of the abnormality of both cleft lip and cleft palate can vary greatly. The most common early problem associated with these abnormalities is feeding your baby.
What Causes Cleft Lip and Cleft Palate?
The exact cause of cleft lip and cleft palate is not completely understood. Cleft lip and/or cleft palate are caused by multiple genes inherited from both parents, as well as environmental factors that scientists do not yet fully understand. When a combination of genes and environmental factors cause a condition, the inheritance is called “multifactorial” (many factors contribute to the cause). Because genes are involved, the chance for a cleft lip and/or cleft palate to happen again in a family is increased, depending on how many people in the family have a cleft lip and/or cleft palate. If parents without clefts have a baby with a cleft, the chance for them to have another baby with a cleft ranges from 2 to 8 percent. If a parent has a cleft, but no children have a cleft, the chance to have a baby with a cleft is 4 to 6 percent. If a parent and a child have a cleft, the chance is even greater for a future child to be born with a cleft. Genetic consultation is suggested.
Symptoms of Cleft Lip and Cleft Palate
The symptoms of these abnormalities are visible during the first examination by your infant’s physician. Although the degree of the abnormality can vary, upon inspection of the mouth and lips, the abnormality can be noted, as there is an incomplete closure of either the lip, roof of the mouth or both.
Challenges Associated with Cleft Lip and Cleft Palate
Beyond the cosmetic abnormality, there are other possible complications that may be associated with cleft lip and cleft palate, including the following:
Feeding difficulties occur more with cleft palate abnormalities. The infant may be unable to suck properly because the roof of the mouth is not formed completely.
Ear Infections and Hearing Loss
Ear infections are often due to a dysfunction of the tube that connects the middle ear and the throat. Recurrent infections can then lead to hearing loss.
Speech and Language Problems
It is common for children who are born with cleft palate to have speech problems at some time in their lives. Before the palate is repaired, there is no separation between the nasal cavity and the mouth. This makes it difficult for the child to learn how to make many speech sounds since the child cannot build up pressure in the mouth and there is less tissue on the roof of the mouth for the tongue to touch. The delay in speech sound acquisition may negatively affect language development. Your child’s speech and language skills should be monitored throughout your child’s development by a speech language pathologist.
Due to the opening of the roof of the mouth and the lip, muscle function may be decreased, which can lead to a delay in speech or abnormal speech. Referral to a speech therapist should be discussed with your child’s physician.
As a result of the abnormalities, teeth may not erupt normally and orthodontic treatment is usually required.
Feeding Babies with Cleft Palate
The most immediate concern for a baby with cleft palate is good nutrition. Sucking for children with a cleft palate is difficult because of the poorly formed roof of the mouth. Children with just a cleft lip (without a cleft palate) do not routinely have feeding difficulties and may direct breastfeed without problems. However if the palate is involved, direct breastfeeding exclusively is very difficult. There are several special cleft bottles available. Please consult with the Cleft Team regarding these options.
For more information on feeding an infant with a cleft palate, visit the Cleft Palate Foundation website and view the video Feeding Your Baby.
Our Team Approach
There will be many people involved in management of a cleft abnormality for your child, because many different skills are needed to help with the problems that can occur with cleft abnormalities. The standard of care is a multidisciplinary team of specialists. The following are some of the members of the team:
- Plastic/craniofacial surgeon: A surgeon with specialized training in the diagnosis and treatment of skeletal abnormalities of the skull, facial bones, and soft tissue; will work closely with the orthodontists and other specialists to coordinate a surgical plan. Most craniofacial and plastic surgeons that repair clefts have received specialized training during a fellowship beyond basic plastic surgery residency training.
- Orthodontist: A dentist who evaluates the position and alignment of your child’s teeth and coordinates a treatment plan with the surgeon and other specialists.
- Pediatric dentist: A dentist who evaluates and cares for your child’s teeth.
- Speech and language specialist: A professional who will perform a comprehensive speech evaluation to assess communicative abilities and who will closely monitor your child throughout all developmental stages.
- Otolaryngologist (ear-nose-throat specialist): A physician who will assist in the evaluation and management of ear infections and hearing loss that may be side effects of your child’s cleft abnormality.
- Audiologist (hearing specialist): A professional who will assist in the evaluation and management of hearing difficulties your child may have.
- Genetic counselor: A professional who reviews the medical and family history, as well as examines your child to help in diagnosis. A genetic counselor also counsels your family regarding risk for recurrence in future pregnancies.
- Nurse team coordinator: A registered nurse who combines experience in pediatric nursing with specialization in the care of your child and acts as liaison between your family and the cleft team.
- Social worker: A professional who provides guidance and counseling for your child and your family in dealing with the social and emotional aspects of a cleft abnormality and assists your family with community resources and referrals (i.e., support groups).
Treatment Options for Cleft Lip and Cleft Palate
Treatment for cleft lip and palate includes surgical and nonsurgical options and a complete team approach to help with the multiple complications that can occur. Specific treatment will be determined by your child’s physician based on:
- Your child’s age, overall health and medical history
- Specific qualities of your child’s abnormality
- Your child’s tolerance for specific medications, procedures, or therapies
- Involvement of other body parts or systems
- Your opinion or preference