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When the Morgans adopted Paul, they were up for a challenge of parenting a child with special needs. They knew Nationwide Children's Hospital could provide comprehensive care so Paul will have every chance for success in life.
Cleft Lip and Palate Helping Hands
All new patients are evaluated thoroughly by the clinical geneticist who is also a Pediatrician. Growth and development are also evaluated. If there are any issues other than the cleft lip/palate then further testing is recommended. This may include blood tests, X-rays, special tests, or referrals to other specialists. If a specific diagnosis is made, the family is appropriately counseled regarding diagnosis, prognosis, special needs, recurrence risks, and pre-natal testing. A counseling letter is sent to the family along with appropriate brochures. A genetic counselor is also involved with the families and available for any future concerns. The children are monitored on a regular basis.
A comprehensive feeding evaluation is an integral component of the team care which is completed by a registered nurse. Infants born with a cleft palate may face some feeding challenges which will require modifications in feeding techniques. There are several types of special bottles and nipples especially designed to be used with cleft affected infants. A nurse works with the family to determine the feeding system that is best for their infant. Clinical Dietitians and Lactation Consultants are also available for consultation.
Learn more from the Cleft Palate Foundation about feeding your baby.
A perceptual speech evaluation involves a speech-language pathologist listening to your child talk and making judgments regarding their intelligibility (speech clarity), articulation (pronunciation), voice, and resonance (degree of nasality). The speech-language pathologist will engage your child in a conversation, picture-naming games, or word and sentence repetition to elicit enough speech to make decisions regarding the overall quality of their speech. When listening to your child talk, the speech-language pathologist can also obtain important information regarding whether your child may have velopharyngeal dysfunction, a speech disorder sometimes associated with cleft palate, to determine if additional diagnostic tests or treatment are needed.
If there are concerns with your child’s articulation, resonance, or voice, or if velopharyngeal dysfunction is suspected, additional testing will follow and may include standardized testing, Nasometry, Pressure-flow Analysis, and/or Nasopharyngoscopy.
Children born with cleft palate are at high risk for speech and language difficulties. The speech-language pathologist may use formal speech and language tests to more closely assess your child’s speech sound errors or language difficulties (such as their vocabulary size, grammar skills, verbal comprehension, etc.). These tests typically involve having your child name pictures, repeat words, point to pictures, follow verbal instructions, and reply to questions. Your child’s responses are then scored to determine if their responses are similar to other children of the same age, or if their responses suggest that their speech or language skills are behind what is expected for their age. This information is very helpful in determining the type and degree of speech-language problem, determining if your child is eligible for speech-language therapy services, and/or documenting progress with skills over time.
Even after palate repair surgery, some children with cleft palate may have excessively nasal speech, referred to as hypernasality. When hypernasality is observed during the perceptual speech evaluation, the speech pathologist may then perform Nasometry to document the amount of nasality in your child’s speech.
Nasometry is a non-invasive test performed by the speech-language pathologist during the speech evaluation. It involves having your child wearing a special “hat” (headgear) that has two microphones attached to it. The microphones are positioned in front of the nose and mouth to measure the amount of nasality that is present while your child says words or reads a short story out loud. The speech pathologist then interprets your child’s score (called a nasalance score) relative to a normal “cutoff” score to determine if further testing or treatment is necessary. Nasometry is often used before and after certain types of surgery to document the improvements heard in your child’s speech as well.
When the perceptual speech evaluation reveals that a child has hypernasal speech (excessively nasal speech), nasal airflow escaping through the nose during speech (called audible nasal emission), or other symptoms of velopharyngeal dysfunction, it may be helpful to see how structures of the nose and mouth are working to determine what is causing these problems.
Nasopharyngoscopy (pronounced: nay-so-fair-en-gos-copy) is a procedure that provides a view of the inside of the nose and throat and allows the doctors and speech pathologist to evaluate the child’s velopharyngeal closure (closure of the soft palate against the side walls and back wall of the throat during certain speech sounds). During nasopharyngoscopy, a thin flexible camera (similar to size of a spaghetti noodle) is guided into your child’s nose. The picture is displayed on a monitor and video recorded. Once the camera is in place, it can look down into the throat and airway while your child talks. A local anesthetic and nasal decongestant is sometimes sprayed into the child’s nose before this procedure, to numb the nose so that the procedure is more comfortable. The child is awake and is encouraged to talk during the procedure. The best exam is obtained when the child is able to repeat specific words and sentences with the speech pathologist, to provide the doctors with the information they need to plan your child’s treatment.
Pressure-flow analysis is a special type of speech testing that allows the speech pathologist and doctors to measures the size of the opening between the oral and nasal passageway during speech. This testing involves having your child speak with their nose and mouth placed against a small mask and hold a small tube between their lips. Pressure-flow analysis can also determine how much air pressure the child produces through the mouth during speech, the amount of airflow through the nose, and determine how well the soft palate is moving during speech to provide adequate velopharyngeal closure.
Children born with cleft palate are at risk for hearing loss due to abnormal function of the muscular tube (called the Eustachian tube) that helps clear fluid from behind your child’s eardrum. Because fluid can collect in this space (the middle ear space), many children with cleft palate will need frequent monitoring of their hearing and middle ear function, even after palate repair. The most common type of hearing problem associated with cleft palate is usually temporary and treatable. In the vast majority of cases, most children with require placement of special tubes into their eardrums (called ventilation tubes or pressure-equalization tubes) in order to prevent fluid from accumulating in the middle ear space and to reduce the risk of hearing loss.
As part of your child’s team appointment, they will typically undergo hearing testing (called audiometry) and measurement of the function of the eardrum and middle ear space (called tympanometry). Additional information about hearing testing.
Children with cleft lip/palate will work closely with many specialists during treatment, especially related to dental care. To improve the quality of your child’s teeth, your child will most likely work with a pediatric dentist, an orthodontist and an oral surgeon, all who will make a coordinated plan to fit your child’s dental needs. The goal of the pediatric dentist is to make sure that your child’s teeth are healthy and clean. An orthodontist’s goal is to help make sure your child’s teeth and jaws are well aligned and that they function properly. The goal of the oral surgeon is to help make sure that the permanent teeth have enough bone to come in, and that the upper and lower jaws are in the right position to work properly.