ABM Clinical Protocol #17: Guidelines for Breastfeeding Infants with Cleft Lip, Cleft Palate, or Cleft Lip and Palate—Revised 2019

Abstract

A central goal of the Academy of Breastfeeding Medicine is the development of clinical protocols for managing common medical problems that may impact breastfeeding success. These protocols serve only as guidelines for the care of breastfeeding mothers and infants and do not delineate an exclusive course of treatment or serve as standards of medical care. Variations in treatment may be appropriate according to the needs of an individual patient .

Background

WHEN A CLEFT LIP (CL) occurs, the lip is not contiguous, and when a cleft palate (CP) occurs, there is communication between the oral and nasal cavities (see Fig. 1 for a completely formed lip and palate). CL may involve the lip only; lip and alveolus; or lip, alveolus, and a notch in the hard palate. The notch in the hard palate may extend all the way to the incisive foramen ( Fig. 2 ). Similarly, a CP may involve only the uvula (e.g., bifid uvula), the uvula and soft palate, or extend through both the hard and soft palates ( Fig. 3 ). In a complete cleft of hard and soft palates, there is no bone or muscle separating the oral and nasal cavities. A CP may be submucosal and not immediately detected intraorally if there are subtle or no corresponding clinical signs or symptoms. Therefore, it is essential that health professionals check for palatal clefting (both overt and submucosal) on initial presentation, by visually inspecting and palpating the palate. This should be done using a tongue depressor and flashlight to allow for inspection of the entire palate, including the uvula. An oral examination is of relevance if an infant is presenting with feeding difficulties or not gaining weight.

Surgical cleft repairs can involve multiple procedures, depending on the nature and extension of the cleft (i.e., unilateral CL versus bilateral cleft lip and palate [CLP]). The primary repair(s) are generally completed within 18 months of life, with the lip being repaired before the palate at 3–9 months of age.

Incidence

The worldwide prevalence of CL and/or CP (CL/P) ranges from 0.8 to 2.7 cases per 1,000 live births. There are differences in incidence rates across racial groups and geographical locations, with the lowest reported incidence among populations of African (~0.5/1,000) and European descent (~1/1,000 births) and higher incidence among Native American (~3.5/1,000) and Asian (~1.7/1,000) populations.

Although reports vary considerably, it is estimated that out of the total number of infants with CL/P, ~50% have combined cleft lip and palate (CLP) ( Fig. 4 ), 30% have isolated CP, and 20% have isolated CL; CL extending to include the alveolus occurs in ~5% of cases. Clefts are more commonly unilateral, but can also occur bilaterally. Approximately 30% of cases are part of identified syndromes or multiple congenital anomaly disorders, such as 22q11 deletion syndrome, Van der Woude syndrome, or Pierre Robin sequence. The remaining 70% are nonsyndromic and occur in isolation of identified syndromes.