Newly Identified Developmental Delays in a Large Population of Children with Nonsyndromic Cleft Lip and/or Palate

PURPOSE: Nonsyndromic cleft lip and/or palate (NSCLP) is the most common congenital craniofacial anomaly. Early recognition of any associated developmental delay is critical to counseling families and developing individualized treatment plans. Here we sought to identify developmental delays associated with NSCLP in a large population of children in order to begin identifying etiology and improve multidisciplinary management. METHODS: This is an IRB-approved, single-center retrospective analysis of all patients with a diagnosis of cleft lip and/or cleft palate between 5 and 21 years of age. Demographic and clinical variables were collected from this patient population as well as from children comprising the 2018 National Survey of Children’s Health database. RESULTS: All children with an identified or suspected genetic syndrome were excluded (160 in our cohort and 1383 in the National Survey of Children’s Health database). Subsequently, 619 children in our cohort and 29,147 in the National Survey of Children’s Health database were identified with NSCLP and included in our analysis. The mean birth weight amongst NSCLP children was lower than that in the national cohort (108.5 ± 24.8 oz versus 117.8 ± 19.1 oz; P < 0.0001). Nearly one-fourth (25.8%) of children with NSCLP were admitted to the NICU at birth. The distribution of cleft lip/palate diagnoses in the NSCLP cohort is shown. Compared with the national cohort, children with isolated cleft palate had significantly higher rates of intellectual disability (3.2% versus 0.5%, P < 0.00001), speech delay (70.8% versus 7.1%, P < 0.00001), global developmental delay (15.7% versus 5.8%, P < 0.00001), cerebral palsy (2.2% versus 0.3%, P < 0.00001), and hearing loss (25.9% versus 1.0%, P < 0.00001). Rates of learning disability (7.0% versus 5.9%, P = 0.529), behavioral delay (7.6% versus 11.4%, P = 0.1038), ADD/ADHD (2.7% versus 2.3%, P = 0.7032), autism (4.3% versus 5.5%, P = 0.5005), and vision loss (1.6% versus 1.2%, P = 0.5764) were comparable between those with isolated cleft palate and the national cohort. Children with cleft lip (with or without cleft palate) had significantly higher rates of ADD/ADHD compared with the normative national cohort: isolated cleft lip (7.7% versus 2.3%, P = 0.0092), unilateral cleft lip and palate (4.6% versus 2.3%, P = 0.0088), bilateral cleft lip & palate (5.9% versus 2.3%, P = 0.0153). CONCLUSIONS: Our study demonstrates, for the first time, higher rates of various developmental delays in children with NSCLP compared with the general pediatric population. This includes increased rates of intellectual disability, global delay, and cerebral palsy in children with nonsyndromic isolated cleft palate and increased ADD/ADHD in children with cleft lip (with or without cleft palate). The association of NSCLP diagnoses with developmental delays highlights the importance of proper risk assessment of patients, appropriate family counseling, and multi-disciplinary team management.