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Management FAQ's

Managing feeding issues

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.

  • If your baby has a cleft palate that only involves her soft palate, a nipple shield might be helpful in assisting with breastfeeding.
  • If your baby is working too hard to suckle, or if her cleft palate involves the hard palate, she may need a special device with a small cross cut in the silicone nipple.
  • If your baby has both a cleft lip and a cleft palate, she will most likely need a special feeding device, because it allows milk to be pumped in time with the baby’s suck-swallow sequence. A special nipple may also be added to help deliver the flow of milk.

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.

  • Feedings should last no more than 30 minutes; prolonged feeding can exhaust you and the baby, and infants spend calories very quickly.
  • However, it’s important to feed your baby every 3 to 4 hours. Never let him go more than four hours without a feeding—unless he is close to meeting his volume quota for the 24-hour period.
  • Weigh your infant once per week. If he is not gaining more than one ounce per day, you should talk to your pediatrician about increasing the caloric content of the milk.

Q. How do I keep my baby sucking sufficiently?

  • Establishing a “rhythm” with your infant is paramount: Watch for your infant’s “hunger cues” and do not interrupt a sucking pattern.
  • When the sucking stops, burp your infant while holding him upright and supporting his lower jaw.

Q. Is there a positioning technique for bottle feeding?

Yes: Wrap your infant, enclosing the hands, in a blanket. This is called “swaddling.”

  • Sit in a comfortable chair, like a rocking chair or a “glider” chair, with a footstool.
  • Hold the baby upright in your arms or hold his head from behind.
  • Relax your arms, and place the nipple gently into the baby’s mouth.
  • Lay the nipple on top of the baby’s tongue.
  • Rotate your arm so that the underside of your hand is holding the bottle. Put your ring finger under the baby’s chin.
  • With firm pressure, keep your ring finger in place so as the baby suckles you feel pressure against your finger. Your infant should feel comfortable while suckling (i.e., no straining or squirming to access the nipple or to swallow).
  • If your infant has both a cleft lip and a cleft palate, position the nipple so that his upper and lower gums connect with it.
  • With gentle pressure under the chin, push up to start your baby’s sucking.
  • Maintain this pressure. If, after a minute of sucking, there is little flow of milk, rotate the nipple to a longer line or compress the nipple with gentle pressure in rhythm with your baby’s suck- swallow reflex.
  • Watch for cues that your infant is either satiated or needs burping (“bubbling”).

Q. What should my baby and I do right after feeding?

  • Keep the baby upright for about 20 minutes, either by holding him or by placing him in a seat.
  • If you place your baby in a bed, slightly turn his body to the side with a wedge.
  • Elevate the bed by 20 degrees: his chest should be higher than his stomach.
  • An infant with a cleft palate may exhibit some esophageal and nasopharyngeal reflux(milk coming out through the nose), or he might regurgitate shortly after feeding has ended. You should always keep a suction bulb handy for these instances.
  • Record the time, length and amount of feeding.
How can I adjust the feeding process if my baby is not gaining sufficient weight?

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:

  • Your child’s treatment team may recommend a naso-gastric tube, which is passed through the baby’s nostril into his stomach to provide a direct source of nutrients. However, this is only a temporary solution until the baby is able to consume all necessary calories by mouth.
  • If your baby is having trouble with both eating and breathing, your doctor may recommend a gastrostomy tube, which is placed directly into his stomach from the outside of the belly under general anesthesia. The food source is delivered to the stomach through a syringe or mechanical device. A gastronomy tube is normally used only until the child is old enough to eat by mouth.

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).

  • Begin by using the cup to replace one feeding a day, and gradually increase the number of cup feedings.
  • Over several weeks, you should be able to completely transition to a cup.
  • Begin spoon feedings, using a soft-tipped spoon, when your baby is 6 months old. As directed by your pediatrician, you may give her cereal, fruits, vegetables and other foods with the spoon. You may also use the spoon to feed her liquids.

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.

  • In some instances, your child may return to using a cleft feeder. If the cleft feeder is not appropriate for your child, a “sippy cup” will be introduced prior to the surgery.
  • Your child should use a cup that either has a very short spout, or doesn’t have a spout at all. Your nurse will show you the type of cup that’s best for your child.
  • Remember that you will need to use a cup for all feedings during the first 10 to 14 days after your child’s cleft palate repair.
  • If your child is having difficulty getting enough fluid with the cup, it is permissible to use a silicone nipple with a large cross cut. This can be accomplished by using the bottle or a standard soft silicone nipple.
  • Ten days after surgery, you can begin to give your child soft foods with the side of a soft-tipped baby spoon. After each feeding, be sure to rinse your child’s mouth with a small amount of water from a cup or special syringe.

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.

Managing hearing difficulties

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:

  • Very young infants (newborn to 6 months) undergo a special hearing evaluation called an Auditory Brainstem Response Evaluation (ABRE). This test is performed while the child is asleep.
  • Older infants (at a developmental level of 6 months or more) can undergo a hearing evaluation with behavioral audiometric test methods. This type of test is conducted while the child is awake and able to participate.
  • Children between the ages of 7 months and 2 ½ years typically undergo a Visual Reinforcement Audiometry (VRA) hearing test
  • A child who is between 2 ½ and 5 years old should have a hearing test by conventional audiometric testing methods (also known as the “hand-raise response” test).
  • Tympanometry testing is often performed at the time of hearing evaluation. This is a test of middle ear function, and can also be used to check the function of ear tubes and to detect the presence of an eardrum perforation.

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.

Managing speech/language issues

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.

Managing dental and orthodontic issues

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?

  • Brush your child’s teeth at least twice a day to minimize the likelihood of cavities.
  • Avoid foods with a lot of sugars and starches. Frequent snacking is especially harmful to the teeth, since the bacteria in dental plaque produce cavity-causing acids each time food enters the mouth.
  • Fluoride, whether through the water supply or through prescribed supplements, has been proven to reduce the amount of decay in the baby teeth and permanent teeth. The greatest benefits from fluoride occur between 6 months and 8 years of age. Therefore, a child with a cleft lip/cleft palate should be placed on the optimal fluoride dosage early in life.

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.

  • Common problems include missing, malformed or extra teeth in the region of the cleft.
  • Absent teeth may need to be replaced artificially or by moving teeth into the space with orthodontics.
  • A dental implant can be inserted if a tooth is missing. This may be an option for your child once his dental growth is complete.

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

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.

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.

Phase II orthodontics

A second phaseof orthodontics uses braces to properly align the permanent teeth. Braces are usually worn during the early teen years, and help to:

  • deal with eruption of the canine teeth
  • further align all teeth
  • resolve tooth crowding

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.

Phase III orthodontics

Some patients may need to continue wearing braces and/or a headgear throughout late adolescence and into early adulthood.

Psychosocial and emotional support

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:

  • worries about being “different” or “abnormal”
  • teasing and bullying by classmates
  • feelings of loneliness and isolation
  • self-consciousness about speaking in front of the class or interacting with groups of peers
  • poor self-esteem
  • concerns about being unattractive

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:

  • identify and talk about worries, frustrations and other feelings
  • stop recurring negative thoughts as soon as they start
  • build a positive and healthy self-image
  • change and improve relationships with family members and friends
  • relax the mind and body during times of stress