Q. How do I feed my newborn with a cleft lip/cleft palate?
Your baby’s ability to feed, whether by breast or bottle, is determined by the extent or severity of her cleft lip/cleft palate. Right after birth, your cleft team nurse will determine the type of feeding method that’s best for you and your baby.
Q. How much milk does my baby need?
Your cleft team nurse will help you determine the total volume of milk your infant needs to consume over a 24-hour period.
Q. How do I keep my baby sucking sufficiently?
Q. Is there a positioning technique for bottle feeding?
Yes: Wrap your infant, enclosing the hands, in a blanket. This is called “swaddling.”
Q. What should my baby and I do right after feeding?
If your baby is gaining less than one ounce per day, calories in the formula or breast milk need to be increased. This can be accomplished by concentrating the formula or adding powdered milk to your breast milk. Your pediatrician and cleft team nurse will help you with these steps.
If a particular feeding device is not working for you or for your infant, your cleft team nurse will give you alternative feeders to try. If your baby’s weight gain is insufficient even after increasing the calories per volume, you may need to consult with a pediatric gastrointestinal/nutrition specialist.
Q. Are there ways to supplement or replace oral feeding?
When oral feedings are not sufficient for your baby, there are other methods that can be used to deliver the needed calories:
Q. How do I feed my child in preparation for her cleft palate repair?
Some—but not all—babies are introduced to cup feeding before surgical repair of their cleft palate. It will take several months for your baby to get used to cup feeding, so it’s good to start early (around 6 months of age).
Q. How do I feed my child after her cleft palate repair?
Your cleft team nurse will review feeding instructions at the time of your baby’s cleft palate repair.
Q. How do I ensure that my baby is nurtured as well as nourished?
It’s important to remember that your infant is a normal baby who just happens to have an anatomic defect that can be surgically corrected. Once you feel comfortable with the feeding method your cleft team nurse teaches you, you will be more at ease with nurturing. You will see your baby thriving, smiling and responding to your touch.
It is very important that at least three people you trust with supporting and assisting you in feeding your baby learn and feel comfortable with the chosen feeding method, too. Your infant can sense when someone is confident with feedings, and will be more relaxed as a result.
Q. Will my child have difficulty hearing?
Many—but not all—children born with a cleft palate experience temporary hearing loss because of fluid in the middle ear and recurring ear infections. This hearing loss may last for a short time, or it can go on for a number of months.
Since speech and language development are influenced by a child’s ability to hear well, any hearing problems he has can also cause speech difficulties.
Q. How and when will my child’s hearing be tested?
Your child will have his first hearing test early in life, and again prior to surgery to repair his cleft palate. His age and developmental level will determine which hearing test method will be used:
Your child’s audiologist (hearing specialist) will assess his hearing every 6 to 12 months, and will work closely with an otorhinolaryngologist (ORL)—an ear/nose/throat specialist. Before his cleft palate repair, your child will be seen by the ORL specialist to discuss his ear function and any special care he may need.
Q. How is persistent middle ear fluid and associated hearing loss treated?
Because the tube that connects the middle ear to the throat (called the Eustachian tube) does not drain normally in an infant with a cleft palate, fluid collects in the baby’s middle ear space. This fluid—also known as effusion—is present in virtually every baby with an unrepaired cleft palate who is younger than 1 year of age. The accompanying hearing loss can cause difficulties with speech, language and cognitive development as the child grows.
Persistent fluid in the middle ear is also associated with a recurring infection called otitis media. Infants with a cleft palate, middle ear effusion and hearing loss will require an operation to remove the fluid and to insert a ventilation tube. This operation is performed under general anesthesia, usually at the same time as the cleft palate repair.
The ventilation tubes will stay in place for 9 to 12 months, and your child’s ORL specialist will check them every 6 months. The tubes usually fall out on their own, and do not require another surgery for removal.
As many as half of all infants who undergo cleft palate repair will need a repeat insertion of ventilation tubes. Although they unfortunately carry a risk of eardrum scarring and perforation, the tubes are necessary to ensure normal long-term hearing, and are crucial to healthy speech and language development.
Q. How does the palate affect speech?
The hard and soft palate separate the mouth from the nose. When we breathe, the air flows in and out of our lungs through the nose and throat. When we talk, the muscles in the soft palate move the palate to the back of the throat to seal off the nose (this is called the velopharyngeal valve). This sealing allows air to flow through the mouth alone when we speak; there are only three speech sounds in the English language (“m,” “n” and “ng”) that are made through the nose instead.
Q. Will my child experience difficulty speaking?
A cleft lip alone does not cause speech problems. A child born with a cleft palate, however, is unable to make normal speech sounds—other than those three nasal sounds rendered through the nose—until the defect is repaired. Some children with a cleft palate experience both speech and language delays. These may be related to the temporary hearing loss associated with the cleft palate and middle ear fluid. Children may also exhibit difficulty with speech if their palate is not effectively closing off the nose from the mouth while they are speaking.
The good news is that most children will acquire speech and language skills at a normal pace after their cleft palates are repaired, and once middle ear tubes are placed for drainage.
Q. How will my child’s speech change after repair of his cleft palate?
Right after his cleft palate repair, your child’s sounds may decrease in frequency and variety. It can take up to 6 weeks for him to resume his normal vocalization.
A speech pathologist will work with you to design home activities that can help your child build and maintain normal speech and language capabilities. For example, you should encourage him to make “lip” sounds (“p” and “b”) and “front of the tongue” sounds (“t”, “r” and “d.”) You can do this with playful “lip-popping” games—like mimicking a fish—and tongue-clicking games—like mimicking a horse’s trot. One of our former patients even reports practicing with peanut butter in his mouth!
Sounds made in the throat, such as “uh oh,” and animal roaring sounds should be discouraged, as they can lead to poor speech habits in a child recovering from cleft palate repair.
Q. Will my child need speech therapy?
Speech therapy teaches children to make and express sounds in a normal manner. The speech pathologist on your child’s cleft treatment team will determine whether she needs this type of therapy. If so, the pathologist will usually recommend treatment in either an early speech intervention program or a community school program.
Q. Can my child have her adenoids or tonsils removed if he/she needs to?
The adenoids—clumps of tissue located at the rear of the nasal cavity—naturally assist a child in sealing off her nose during speech. While many children have their adenoids removed at some point, a child with a cleft palate should only undergo adenoid removal after consultation with her cleft treatment team.
By contrast, the tonsils do not play a role in sealing off the nose from the mouth, and can be removed without issue if there is a medical need to do so.
Q. What is a pharyngeal flap, and how can it address speech problems related to a cleft palate?
Between 5 and 15 percent of children who undergo cleft palate repair remain unable to sufficiently seal off the nose during speech. As a result, their speech sounds overly nasal—this is also known as velopharyngeal insufficiency (VPI).
A child with this condition can benefit from another operation, called a pharyngeal flap, which repositions some tissue from the soft palate at the back of the throat in order to stop some of the escaping air. This surgery is performed when the child is about 5 years old, after a thorough evaluation by a speech pathologist, otolaryngologist and plastic surgeon.
Q. How often should my child’s speech capabilities be evaluated?
Your child’s speech should be evaluated every 6 months until the age of 3, and on a yearly basis thereafter. You are encouraged to contact your team’s speech pathologist at any time if you have questions or concerns.
Q. Will my child’s cleft lip/cleft palate affect his teeth?
Your child’s first tooth (usually the lower incisor) may appear between 4 and 14 months of age. By age 3, all children usually have their primary (baby) teeth.
A child with cleft lip and/or cleft palate may have poorly formed enamel (outer tooth layer) on some of his teeth, especially those near the cleft. Teeth in this region may also be out of alignment, partially erupted and, therefore, difficult to clean. All of these factors make children with a cleft lip/cleft palate more susceptible to developing cavities.
Q. How should I take care of my child’s teeth?
Q. When should my child see the dentist for the first time?
If your child has a complete cleft lip/cleft palate and has needed a dental appliance, you probably have already met our dental team! Your child should visit a pediatric dentist between the ages of 12 and 18 months, or earlier if you have any questions or concerns.
Q. What dental issues should I expect as my child gets older?
As your child grows and his teeth and bite develop, your pediatric dentist and orthodontist will periodically evaluate the need for treatment.
Q. Will my child need orthodontic therapy?
Since a cleft palate almost always affects a child’s bite, most children with the condition will need at least one phase of orthodontic treatment. The decision to receive orthodontic care should be made by your child’s pediatric dentist, or by an orthodontist who has specialized expertise in treating children with cleft lip/cleft palate.
Phase I orthodontics are used when the child still has some of his “baby teeth” (typically between the ages of 7 and 10). During Phase I for a child with a cleft lip/cleft palate, an orthodontist uses an appliance to widen the palate in preparation for the alveolar bone graft procedure.
The alveolar bone graft procedure is usually performed between the ages of 8 and 10.
During the procedure, the bone is harvested from the child’s hip region; it is then used to connect the soft tissue and bony gap in the upper jaw. The bone graft heals and solidifies to provide support for the surrounding teeth and/or a dental implant. Most children can resume full physical activity, including sports, within two to three months.
Minor revisions of the lip and nose also can be done during the bone graft operation.
A second phaseof orthodontics uses braces to properly align the permanent teeth. Braces are usually worn during the early teen years, and help to:
Some children may also be fitted with a reverse-pull headgear at this time. This device corrects an underbite(abnormal protrusion of the lower jaw, crossing over some of the top teeth), which is a fairly common complication in children with a cleft palate.
Some patients may need to continue wearing braces and/or a headgear throughout late adolescence and into early adulthood.
Many children with a cleft lip/cleft palate have a healthy self-image—especially if their cleft has been repaired very early in life.
However, some children (particularly those with more severe defects that require treatment over several years) experience emotional and social difficulties, including:
In addition, as with any chronic medical problem, a child undergoing long-term care for his/her cleft lip/cleft palate may experience psychological complications related to his/ her diagnosis and treatment
For all of these reasons, a child psychologist, social worker or other mental health professional can be a valuable addition to your child’s treatment team. Using “talk therapy,” the clinician will work with your child to: