The first visit/newborns

When a child is born with a cleft lip or palate there are many questions and concerns that the parents may have about feeding their baby, surgery, and treatments involved.

A child’s first appointment should be between one and three weeks of age. This appointment gives families information regarding treatment, and evaluates the need for pre-surgical treatment interventions needed by some children with bilateral and wide unilateral clefts of the lip and palate. This appointment may last three to five hours depending on questions the parents may have and the complexity of the child’s problems.

Cleft clinic return visits

Most children will be scheduled for clinic appointments every six months if they have a cleft of the lip and palate or yearly if they have a cleft lip only, until the age of five. These appointments are designed to observe developmental aspects of speech and facial growth as well as hearing and post-surgical repair status.

Plastic surgery/otolaryngology, audiology, speech pathology, and orthodontics/pediatric dentistry typically see children as a part of these appointments. The pediatric psychologist, genetics, or social services may also see them at these visits. These appointments may take between four to six hours, depending on the number of specialties seen and questions the parents may have regarding the treatment plan. Before children enter school they should be evaluated to see if additional lip and/or nose revision is needed, and if secondary management of the palate is a concern for speech issues.

After age five, yearly appointments are encouraged to observe growth and development. Your child will continue to be followed by the cleft team specialists each time they return. You are free to see any of the team members on any visit and if you have special concerns or requests please discuss these with the clinic coordinator.

Speech evaluations

Some of the most common speech problems that children with cleft palate present with are hypernasality and/or velopharyngeal incompetence, nasal emission, compensatory articulation patterns, and possibly voice problems.

You may notice that your child sounds like he/she is "talking through their nose". This could be the result of a resonance disorder: hypernasality. Most commonly, this disorder is caused by velopharyngeal incompetence, which is the inability of the soft palate to close off the nasal cavity from the oral cavity, allowing air to come through the nose during speech. When speech is produced correctly, the soft palate closes off the passage from the oral cavity to the nasal cavity, directing the air from our lungs out of only the mouth.

When the system is not working correctly, air will escape through the nose. Sometimes, this flow of air can be heard coming out of the nose. This is called audible nasal emission. You may feel and hear air coming out of the nose when your child attempts to produce sounds such as /s/, /z/, /p/ , /b/ or other "pressure" consonants. It is also possible that your child may be producing inaudible nasal emission. This would be when you are able to feel the air coming out of the nose during speech, but you are not able to hear it. It is normal for air to come out of the nose when your child is producing the nasal sounds: /n/, /m/, or the "ing" sound.

Speech therapy

Each child must be evaluated individually to determine the most appropriate goals and realistic outcomes. Your speech-language pathologist will determine what deficits (if any) your child has in his speech or language, and develop goals accordingly.

Speech therapy would be warranted for a child who presents with inconsistent hypernasality, phoneme specific nasal emission, or for the child that presents with compensatory articulation patterns which are the result of a learned motor pattern , not as a result of velopharyngeal incompetence. These children would not need another surgery to correct these problems, but would require speech therapy only.

Speech-language therapy would also be helpful for children with language delay. These children require excessive language stimulation. Language therapy will also provide your child with more independence and the ability to express themselves.

If your child presents with phoneme specific nasal emission, the speech language pathologist may implement many articulation drills. It will also be important for your child to be able to distinguish between oral air flow and nasal air flow. Once they are able to identify the different air flows in other people, they will develop the ability to identify the different air flows that they produce. To aid in this distinction, your speech-language pathologist may use an instrument called the Nasometer.

The Nasometer is a computer based system that measures nasalance. There are games that are programmed on the Nasometer that can provide your child with visual feedback of their nasality. It provides them with feedback that they can actually see, instead of just hear. These types of games seem to be extremely motivating and fun for children.

Video nasoendoscopy

Video nasoendoscopy (VNE) is a procedure that is used frequently to assess speech on children ages 3 and older. This procedure involves using an endoscope, which is a thin tube-like scope that allows us to see the back of the throat during speech. A video camera is attached to the eyepiece of the endoscope so that we can see the nostril and back of the throat on a television monitor.

Prior to inserting the endoscope, the inside of your child’s nostril will be numbed with a nasal spray. The majority of children who have had this procedure tolerate it very well, but may experience a slight degree of discomfort, due to fullness/pressure in the nose/throat. Children are instructed to say about 15 words and/or sentences, after which the endoscope is easily removed.

This procedure provides information that is important to our understanding of how the back of the throat works during speech. In addition, we are trying to use nasoendoscopy as an alternative to x-ray photographs whenever possible.

Parents/families role

Parents and family members play a vital role in a child’s speech and language development. It is important the family members participate in modeling good speech and language habits for a child with cleft palate. Language is learned through imitation. All models that children have contribute greatly to their speech and language development.

It is important that vocalizations are encouraged, even to children that are still babbling. Even though your child may not be producing many different sounds, it is still important that they hear all sounds, just as a child without a cleft palate. Parents can participate in vocal play with their infants and children. For example, repeating sounds that they make and beginning to incorporate imitation games.

Consult with your speech-language pathologist and learn to identify compensatory articulation patterns. These sounds should not be reinforced, even in babbling.

Encourage oral air flow versus nasal air flow. Blowing games may be a good way to do this. Have a cotton ball race! Use straws to blow cotton balls across the kitchen table. Have parades around the house using whistles, or party horns. Find different blow toys such as pinwheels and use these to practice oral air flow. Blowing out candles can also be a fun way to practice oral air flow. Although, these are not speech tasks, these types of activities can be used to learn how to direct air out of the mouth versus the nose.

Work closely with your speech-language pathologist to develop a home carryover program. It is important that your child feel success in speech, so always be encouraging...MAKE IT FUN! Continue to provide support for your child and encourage success to increase self-esteem.