Continuum of Cleft Care

When your baby is born with cleft, the delivery room nurse usually calls the cleft palate program for an initial evaluation. Then treatment takes place over time, as your child grows.

Ten weeks

• The first surgery your child will have is the repair of cleft lip and rebuild muscles and tissues around his mouth and nose.
• Your baby should be at least 10 pounds and have no other medical problems that will put them at higher risk for post-surgical complications.
• The surgery takes about an hour and a half. Your child may be able to go home on the same day.
• Your child may have some discomfort from the cleft area after surgery, so you may give your child some pain medicine (please follow the instructions given to you by the prescribing physician).

Six to 10 months

• Your child should have a hearing test on or before six months of age.
• An occupational therapist should follow up with your child to transition to semisolid feedings, cup drinking and weaning off from the bottle and to address any other feeding issues.

Ten to 12 months

• Surgery will close the palate (palatoplasty) along with ear tube placement (if recommended by the otolaryngologist)
• Your child should be at least 17 pounds and off the bottle.

Three to 5 years

• Second surgery will repair the lip and nose because scar tissue from the first surgery does not grow as fast as normal tissue. That means the skin of the lip and nose will be out of place again and need to be adjusted.
• The palate fistula will be repaired. (As the roof of the mouth heals from the first surgery, the muscles pull and small holes may result.)
• A speech therapist will follow up to determine if your child needs speech therapy.
• Psychosocial support is provided to your child, who often endures teasing, especially after beginning preschool.

Five to 9 years

• Your child will have a team assessment at least every six months.
• A dentist and orthodontist will evaluate dental/oral hygiene, maxillary X-ray, and the need for braces and dental expansion, in preparation for alveolar bone graft.
• Nasoendoscopywill determine if intensive speech therapy is needed or if a secondary surgery of the palate is needed.

Nine to 12 years

• Alveolar bone graft will be performed.
• You’ll have a dental/orthodontic follow-up.
• Pharyngoplasty or pharyngeal flap may be performed, depending on the nasoendoscopy result.
• Your child will have ongoing health assessments.

Twelve to 17 years

• Nasal reconstruction will be performed, if recommended
• Lip revision will be performed, if recommended
• Ongoing assessment will continue.

Eighteen to 20 years

• Additional nose and lip revisions may be needed.
• Psychosocial support will be provided as needed.
• Genetic counseling will determine your child’s risk of having children with the condition. People with cleft lip or palate have a 2 to 5 percent chance of having one or more children with the condition
• Any treatment not previously done will be completed.

Twenty-one years

• Coverage for cleft care ends at age 21.

After that time, treatment is considered "cosmetic" surgery and may not be covered by insurance. Please call your insurance company to determine eligibility for services.