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► Cleft Lip and/or Palate

Cleft Lip and/or Palate

Also known as: Cleft Lip/Palate

What is Cleft Lip/Palate?

A cleft is a division or separation of parts of the lip, or roof of the mouth that did not close during the early months of fetal life. The lip and palate are present; they just did not fuse together. There are several types of cleft lip, from an incomplete cleft such as a notching of the lip, to a complete cleft, extending to the lip and nose. Cleft palate may also vary in size, which may include involvement of the uvula and the soft palate, to a complete cleft of the hard palate.
 

Why did this happen?

A Cleft lip and/or palate occurs in approximately 1/700 births. Cleft lip and/or palate usually occurs as an isolated finding and it is not usually associated with any other birth defect. In these cases, the exact causes of the cleft lip and/or palate is unknown, but most experts feel it is due to both environmental and genetic factors. However, in some cases the cleft lip and/or palate may be caused by an underlying genetic condition or due to an exposure during pregnancy.
Many parents blame themselves and experience many guilt feelings. It is important to know that this is not anyone's fault. It is painful to know that your child has a cleft and you may feel that your dreams of a perfect child have been shattered, but letting go of guilt feelings is important to better help your baby.
 

Treatment for Cleft Lip and Palate

With proper treatment your child's cleft/lip palate can be repaired. With time your child will look normal, eat without difficulty, and speak like other children. This will all be possible through a craniofacial multidisciplinary team that will work with you and your child to develop and carry out a plan that will meet your child's needs. The team concept allows all relevant specialties to come together to plan your child's care and address issues (in a timely way).
Treatment includes:

Nasoalveolar molding (NAM)

For many newborns with a cleft lip or nose, reconstructive treatment can begin soon after birth with use of a pre-surgical device known as a nasoalveolar molding (NAM) appliance. This equipment, which is made of acrylic, is used by the Craniofacial Center team to support repair of the child’s lip and nose, and can help reduce the amount of surgical treatment required. The device is utilized to:
Restore the relationship between the skeleton, cartilage and soft tissue pre-surgically
Align and approximate the alveolar segments
Correct positioning of the nasal cartilage
Correct the nasal tip as well as the position of the area below the nose to the upper lip and the portion of the nose between the nostrils

First Steps

Children should be evaluated by the Craniofacial Center staff shortly after birth, preferably when the infant is 1 to 2 weeks old. At that time, the team will assess the child to see if he or she is a candidate for the NAM device.
First, an impression will be taken of the child’s arch using a soft, putty-like material inside an impression tray. A nasal impression may also be made.

Treatment Stages and Duration

Once a child is identified as a candidate, treatment is coordinated in stages.

Stage 1 (Leveling and alignment of alveolar segments):

When the device is initially inserted, you and your baby will be asked to remain at the doctor’s office for a couple of hours for monitoring. Thereafter, the plate will be adjusted approximately every two weeks. The alveolar segments will be moved about two to three millimeters with each adjustment.  The device will be kept in place with a special tape and elastic bands that will apply upward and backward pressure. 

Stage 2 (Addition of nasal stent):

At this stage, a nose piece will be added to the mold to support the nasal tip and promote the growth of tissue. The nose piece will be modified at each visit, according to the child’s individual needs. After receiving the nose piece, the child will produce more saliva initially until he or she adapts to the appliance. Adaptation takes approximately two days.

Treatment Duration:

The length of time that treatment is maintained depends on each patient and his or her specific needs.  The device is typically utilized until surgery is performed.

Special Problems


Feeding a baby with a cleft

A baby with a cleft lip usually does not have trouble feeding.  He or she may require a specialized bottle.  A baby with a cleft palate has difficulty sucking the milk through the nipple.  There are nipples and bottles (Haberman Special Needs Feeder or Mead Johnson Cleft lip and/or palate nurser) that are especially designed for children with clefts.  If a baby has a cleft palate and has difficulty feeding, sometimes a palatal appliance that fits into the roof of the mouth is used.

Haberman Feeder

The Haberman Feeder has a long nipple, which is manually compressed providing steady milk flow.  There is also a one way valve between bottle and nipple to decrease the amount of air swallowed by the infant.  Additionally, the nipple has a variable flow feature to control the rate of liquid flow out of the bottle.   For more information on using the bottle please visit medela at: http://www.medelabreastfeedingus.com 

Mead Johnson Cleft Palate Nurser

The Mead Johnson bottle has a soft plastic compressible bottle and a cross cut nipple that is slightly longer and narrower than a regular nipple.  The long nipple assists in obstructing the cleft palate.  The soft compressible bottle assists parents to control the rate of milk delivered to the baby’s mouth.  Rhythmic squeezing of the bottle cue’s the infant to swallow which helps prevent the milk from coming through the nose.

Breastfeeding a baby with a cleft

Breast milk is the best food for babies.  Babies with a cleft lip can usually breastfeed, but most babies with a cleft palate have a difficult time breastfeeding.  The team’s lactation counselor or the hospital’s lactation consultant can help you determine the best way to feed your baby.

Ear problems in a baby with a cleft palate

Babies with a cleft palate are more likely to have fluid in their ears because of the anatomical problems associated with a cleft.  Fluid buildup in the ear can cause hearing loss.  If the hearing loss is not properly managed and treated, speech development may be affected.  In cases where the fluid persists, pressure equalizing tubes (PE tubes) may be inserted into the eardrum to drain fluid.  The babies hearing and speech will be closely monitored on each visit to prevent any problems.

Speech problems in a baby with a cleft lip and/or palate

Children with a cleft lip generally have no problems with speech.  Some children with a cleft palate may develop speech at a slower rate.  Their words may sometimes sound nasal, and they may have difficulty with consonant sounds.  Some children will require speech therapy or additional surgery to improve speech later on.

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