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Before and after photos of cleft palate

A 7-month-old boy with an unrepaired left unilateral cleft lip and palate (left) and the same patient five years after repair (right). Courtesy of Jennifer L. McGrath, M.D., and Arun K. Gosain, M.D., FACS, FAAP 

Timely referral for cleft palate optimizes patient outcomes

March 1, 2024
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Cleft palate is a common congenital anomaly, affecting one in 1,700 births in the United States. Still, delayed diagnosis and referral occur frequently, leaving families unsupported and delaying treatment.

Specialty teams focusing on the care of children with cleft palate are available in 48 states, providing families with expertise and community.

Making the diagnosis

Cleft palate can occur in isolation or with cleft lip. It may present with other congenital syndromes, such as Stickler, Van Der Woude or 22q11 deletion syndromes.

Maternal risk factors include smoking, diabetes and taking anti-epileptic medications. Most patients, however, have no identifiable risk factors or genetic predisposition.

Improved imaging has increased prenatal diagnosis of congenital anomalies, but most babies with isolated cleft palate are diagnosed after birth on intraoral exam by a pediatrician. Whenever the diagnosis is made, referral to a cleft palate team is essential for comprehensive evaluation and initiation of care and counseling.

Submucous cleft palate is a form of cleft palate with a gap in the muscle beneath the mucosa. Poor feeding, frequent ear infections, poor speech or a split uvula suggest a submucous cleft palate, but diagnosis can be difficult. Not all submucous cleft palates are symptomatic. Therefore, patients with concern for submucous cleft palate should be referred to a specialist for evaluation, since a delay in diagnosis may impact patient outcomes.

Impacts on feeding, speech, hearing

The palate functions to separate the mouth from the nose, and a cleft palate causes disruption to feeding and speech.

Preparing parents for early feeding challenges reduces frustration. Families should understand that breastfeeding may not be possible or will require pumping and bottle feeding. Specialty bottles are used in which milk is delivered either by the caregiver or via compression of the nipple between the baby’s tongue and gums.

Most newborn feeding specialists have general knowledge of bottle types, but referral to a specialty team facilitates evaluation by a speech-language pathologist with expertise in cleft palate.

Cleft palate can cause middle ear effusion, predisposing to ear infections and hearing loss that may impact speech negatively. Proper preventive care can reduce such complications.

Basics of palatoplasty

The goals of palatoplasty are to close the gap in the cleft palate and reorient the musculature to a more functional position.

Surgery requires general anesthesia and an overnight hospital stay for monitoring of the airway and oral intake. Postoperative feeding protocols vary, but infants are expected to feed orally after surgery. Recovery can take four to six weeks, though most infants are back to their baseline by one week.

The opportune timing for palate repair remains up for debate. Most cleft surgeons in the United States plan for repair around 9 to 12 months of age. Delayed repair is associated with speech disturbance and increased secondary speech surgery. Delayed diagnosis, medical comorbidity, adoption and health disparities contribute to delayed surgical care.

Longitudinal care

Care for patients with cleft palate does not stop at the postoperative visit. Long-term follow-up is critical to monitor speech development, hearing, and dental and orthodontic care.

Children may have related or unrelated speech errors, and a critical aspect of speech evaluation is identification of velopharyngeal insufficiency (VPI). Manifestations of VPI include hypernasal resonance and poor intelligibility. If VPI is diagnosed, surgery typically is recommended to close the gap.

Otolaryngology follow-up, including audiometric testing, is essential, especially early in life. Cleft palate also has implications for dental and jaw development. Orthodontic treatment or jaw surgery may be needed to align the teeth and jaws.

Longitudinal care requires multidisciplinary collaboration, making team care a keystone of cleft palate management throughout childhood and adolescence.

Referral to a specialty team should be made as soon as there is a suspicion for the diagnosis to maximize patient outcomes. The American Cleft Palate and Craniofacial Association establishes standards of team care and oversees team approval. Team members include care coordinators, surgeons, orthodontists, speech-language pathologists, otolaryngologists, audiologists, geneticists, dentists, psychologists and social workers.

Dr. McGrath is an attending physician in the Plastic and Reconstructive Surgery Division at Ann & Robert H. Lurie Children’s Hospital of Chicago and assistant professor of plastic surgery at Northwestern University Feinberg School of Medicine. Dr. Gosain is a member of the AAP Section on Plastic Surgery.

 

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