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Cleft Lip and Palate Program

What we do

The Hospital for Sick Children's Cleft Lip and Palate Program is recognized world wide for providing excellence in Cleft Care. The program is the largest program in North America. We see approximately 120 newborns a year and provide regular comprehensive follow up for 3500 children with cleft lip and/or palate.

We are dedicated to providing the optimum care for children with cleft lip and palate throughout their development through an interdisciplinary team approach.

About Clefts

What is a Cleft of the Lip and/or Palate?

A cleft is a separation of the parts of the lip or palate (roof of the mouth), which usually fuse together during the first three months of development. If the parts, which make up the lip and palate fail to meet and fuse, there will be a space between the parts, which is called a cleft. The type and severity of the cleft will vary from child to child. A cleft lip can vary from a slight notch in the red part of the lip to a complete separation of the lip extending upwards into the nose and backwards through the gum line (alveolus) and palate. A cleft palate can be as small as an opening at the back of the soft palate to a large opening of the roof of the mouth.

Types of Clefts of the lip

ConditionDescription
Forme Fruste Unilateral Cleft Lip Forme Fruste Unilateral Cleft LipA forme fruste unilateral cleft lip is a small cleft on one side of the lip. This may appear as a small indentation of the lip.
Incomplete Unilateral Cleft Lip Incomplete Unilateral Cleft LipAn incomplete unilateral cleft lip is a cleft on one side of the lip. It can be on either the left or right side. This type of cleft lip does not go up to the nose
Complete Unilateral Cleft Lip Complete Unilateral Cleft LipA complete unilateral cleft lip is a cleft on one side of the lip. It can be on either the left or right side. This type of cleft goes up into the nose. The nose can be affected significantly.
Incomplete Bilateral Cleft lipAn incomplete bilateral cleft lip is a cleft that occurs on two sides of the lip. This type of cleft does not go up to the nose.
Complete Bilateral Cleft Lip Complete Bilateral Cleft LipA complete bilateral cleft lip occurs on two sides of the lip. This type of cleft goes up into the nose.

Types of Clefts of the palate

ConditionDescription
Incomplete Cleft Palate Incomplete Cleft PalateAn incomplete cleft palate occurs at the back half of the mouth in the soft palate.
Complete Cleft Palate Complete Cleft PalateA complete cleft palate includes both the hard and soft palate.
Submucous Cleft Palate Submucous Cleft PalateA submuous cleft palate.

Why Do Clefts Occur?

Clefts of the lip and palate are one of the most common congenital anomalies in children. They occur in approximately one in 700 births. The cause of the cleft lip and palate is unknown. It is multifactorial. This means that there are familial and environmental factors that contribute to clefting. But both these factors are not understood well. In the majority of new patients that we see, there is no family history of clefts.

Most infants with cleft lip and /or palate are healthy children who have no other birth anomalies. But sometimes, children with clefts may have other medical problems. The geneticist of the program will examine all the infants. He will also discuss with the family the chances of having another infant with a cleft.

Cleft Concerns

A child with a cleft lip and/or palate can have special needs, which should be addressed in order to maximize his/her development:

Feeding

A newborn with a cleft lip and/or palate may have feeding difficulties. Each baby is different. On their first clinic visit, the baby will have a feeding assessment, with the Occupational Therapist. She will provide information and demonstrate how to feed the baby.

Hearing

Good hearing is important for normal speech development. A cleft, which involves the soft palate, may affect the middle ear. The Eustachian tube connects the middle ear with the back of the throat. One of its functions is to allow fluid to drain from the middle ear into the back of the throat. This function may not work well in young children with a cleft palate. As a result, fluid may build up in the middle ear. This fluid can interfere with hearing. At this point, the child can have a temporary hearing loss. This fluid can also get infected, and ear infections are common in children with cleft palates. For this reason, many children have tubes inserted into the eardrum to drain the fluid. The child is then able to hear better and it also decreases the number of ear infections.

Dental Development

A cleft lip and/or palate can affect teeth development. How the teeth are affected will depend on the type of cleft that the child has. Many children are missing teeth, have smaller teeth, have extra teeth and have crooked teeth. It is important that the child receive regular dental care to make sure that the teeth and gums are healthy. Regular visits to the family dentist should begin when the child is one year old. Click Here to learn more about dental concerns in children with clefts of the lip and/or palate

Orthodontics

Orthodontic treatment for a child with cleft lip and/or palate could start as early as a few days old depending on the child’s type of cleft. A baby with a cleft lip and palate may have the upper jaw divided into two or three widely separated parts. A custom fitted orthodontic plate is used to bring the parts of the upper jaw, lips and nose closer together and in a better position. We believe that this improves the final result of the cleft lip repair. Not all infants need this treatment. The orthodontist at SickKids does this treatment. Most children with cleft lip and/or palate will have problems with the alignment of the teeth and jaws. This can be easily corrected. The orthodontist will see the children regularly and treatment will start for some children as early as 7 years old. Click Here to learn more about orthodontics in children with clefts of the lip and/or palate.

Social and Emotional

A cleft lip and/or palate present many adaptation challenges for parents. Within the first year of life there is a succession of highly stressful events, including the infants unusual appearance, feeding difficulties, frequent medical appointments, and surgeries/ hospitalizations, which may have an impact on the adaptation process.

Speech

A child with a cleft of the palate will have speech difficulties if the palate is not repaired. The goal is for the child to develop normal speech. In order for this to happen, the child will need to have an operation to have his or her cleft palate repaired. Many children also need speech therapy after the operation. Some patients also benefit from a second operation if speech development remains affected by the cleft. The Speech-Language Pathologist will regularly assess speech development and will, if necessary, arrange for speech therapy in the community.

Cleft Surgery

All babies with cleft lip or palate should be seen within the first week or two of life by the Plastic Surgeon. At the first appointment, the surgeon will assess your child's condition and discuss the treatment plan. The Plastic Surgeon is responsible for repairing the cleft lip and palate.

Since each child's cleft is unique, different surgical techniques may be used to repair the cleft. Your Plastic Surgeon will discuss with you the surgeries that will be performed on your child.

Also see: How to make a referral