Initial treatment and early weight gain of children with Robin Sequence in Germany: a prospective epidemiological study

Background To investigate birth prevalence of Robin Sequence (RS), distribution of implemented treatments and factors influencing weight gain during initial hospitalisation. Methods Prospective population-based survey (August 2011–July 2013) on new hospital admissions of infants with RS in Germany. RS was defined as retrognathia/micrognathia and at least one of the following: upper airway obstruction, snoring or hypoxaemia; glossoptosis; feeding difficulties; failure to thrive; cleft palate or RS-associated syndrome. Birth prevalence was calculated using data from the National Bureau of Statistics and in-hospital weight gain evaluated by calculating differences in SD scores (SDS) for weight. Comparisons between cohorts were performed using the Wilcoxon/Kruskal–Wallis test or Fisher's exact test. Results 151 patients with RS could be verified resulting in a birth prevalence of 11.3 per 100 000 live births. Orthodontic therapy (feeding plate or pre-epiglottic baton plate, PEBP) was applied most frequently (107 infants), followed by prone positioning (97 infants). Tracheotomy was rarely performed (n=7). For 115 infants, implementation of more than one intervention was reported. Infants with serious respiratory difficulties during initial hospitalisation (n=58) showed a more pronounced decrease in SDS for weight (median (IQR) −0.81 (−1.32 to −0.26) vs −0.48 (−0.86 to 0.02); p=0.008) whereas treatment with PEBP was associated with better weight gain (SDS-difference for weight −0.37 (−1.06 to 0.02) vs −0.74 (−1.09 to −0.35); p=0.022). Conclusions Non-surgical management is preferred for infants with RS in Germany. The extent of upper airway obstruction seemed to influence in-hospital weight gain, while use of the PEBP was associated with improved early weight gain.