Cleft Palate Team

The Cleft Palate Clinic at IWK Health is a multidisciplinary team dedicated to providing optimal care for children and youth with cleft lip and palate in the Maritimes. 

The parts that make up the lip and palate (roof of the mouth) normally fuse during the first three months of pregnancy. When these parts 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 vary from child to child. Clefts of the lip and palate are one of the most common birth defects, and affect roughly one in 700 births. The cause of the cleft lip and palate is unknown and likely caused by multiple factors. Although some cases of cleft lip and palate run in families, in the majority of new patients 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. If this is the case for your child, you may be offered an appointment to see a geneticist to discuss the chances of having another infant with a cleft.

How we help

A child with a cleft lip or palate may have special needs that are best managed by the multidisciplinary Cleft Palate Clinic to ensure the child’s proper development. Our team is skilled in helping you and your child with any of the following needs. 

Feeding
A newborn with a cleft palate may have difficulties feeding due to an inability to form suction. On their first clinic visit, the baby will have their feeding and growth assessed by the clinic nurse, pediatrician, and, if necessary, dietician. These clinic members will provide information and demonstrate how to feed the baby. If the baby has no other medical issues and is growing well, repeated assessments by the clinic pediatrician may not be required.

Hearing
Good hearing is essential for normal development. A cleft, which involves the soft palate, may affect drainage of fluid out of the middle ear. 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 by the clinic ENT (ear nose throat) surgeons. The child is then able to hear better and it also decreases the number of ear infections. Hearing tests are performed by the clinic audiologist to monitor the function of your child’s ears.

Cleft Surgery
All babies with cleft lip or palate should be seen within the first week or two of life by the cleft surgeon. At the first appointment, the cleft surgeon will assess your child's condition and discuss the treatment plan. Since each child's cleft is unique, different surgical techniques may be used to repair the cleft. Your surgeon will discuss with you the surgeries that will be performed on your child.

Speech
A child with a cleft palate will have speech difficulties if the palate is not repaired. The main goal of palate surgery is to repair the muscles in the soft palate in order for the child to develop normal speech. Many children also need speech therapy after palate surgery. 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.

Dental Development
A cleft lip and/or palate can affect the development of teeth. 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’s important that the child receive regular dental care to make sure that the teeth and gums are healthy. 

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 gumline divided into 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. This improves the final result of the cleft lip repair. Not all infants need this treatment. The clinic orthodontist performs 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 organize treatment.

Social Support
A cleft lip and/or palate present many challenges for parents. Within the first year of life there are a lot of stressful events, including the birth of infant with a significant facial difference, feeding difficulties, frequent medical appointments, and surgeries/ hospitalizations. All of these things can have an impact on how families cope, be it due to general worries over the child’s growth and health, or issues like missing work or school. The clinic social worker is available to provide additional support to families.

What to expect

The Cleft Palate Team will receive a consult from your family doctor or obstetrician. The team will review the consult and determine the timeline for an appointment. The administrative support for Cleft Palate will notify the patient/family with an upcoming appointment date and time by phone and/or mail.  If you are unable to keep this appointment, please call the office to reschedule (470-8027).
On the day of your appointment, please arrive in the Shared Clinics area located on the first floor of the Children’s building. You will need to arrive 15 minutes before your appointment for registration purposes. Please allow extra time if you require parking. 

If your child is having a full team assessment, you can expect to be in the clinic for the morning. For those seeing one or two providers, your time in clinic may vary depending on you or your child’s needs. You must bring the child’s health card, a list of medications (drugs) that your child takes, and any toys or books that will entertain your child while you wait. The team may arrange for you to have some diagnostic testing done or see another clinical care team. Every effort is made to coordinate these appointments on the same day. You will be notified by the office for any additional appointments.

Upon arrival in Shared Clinics, please take a number and listen for your number to be called for registration. The administrative support will call your name and depending on you/your child’s appointment schedule you will be directed to a room or to another clinic area. A volunteer is present to help you find your way.

If this is your first appointment with the team you'll meet with the clinic nurse and pediatrician. On subsequent visits you will not see the pediatrician unless there are issues. The clinic nurse will try and meet with you during your following appointments but depending on the business of the clinic this may not always be possible. If you have any questions or concerns please contact the clinic nurse @ 470-7905.

The IWK is a teaching hospital, and as a result, your visit may involve meeting with medical clerks (students), residents (physicians training to be a surgeon), surgical fellows (surgeons doing a subspecialty (pediatrics), and nursing students. Of course you’ll see your attending surgeon at every visit. 

Followup appointments will be arranged depending on your child’s needs and the findings of the team members. A clinical pathway, outlining the plan of care for your child is reviewed on your first appointment. This plan gives a general overview of who your child will see at future appointments and tentative ages for surgery.