Clinical Fellow Hyogo Prefectural Kobe Children's Hospital Kobe, Hyogo, Japan
Background: Advances in multidisciplinary management, including surgery, have markedly improved the survival of infants with trisomy 18, leading to more survivors being discharged home. However, post-discharge management remains challenging, with frequent emergency department (ED) visits and hospital admissions. To improve long-term care, it is essential to assess not only survival trends but also early post-discharge outcomes. Objective: To clarify temporal trends in survival to discharge among infants with trisomy 18 and to characterize post-discharge medical events within one year among recent survivors. Design/Methods: A retrospective review was conducted of infants with trisomy 18 who were admitted to a tertiary neonatal center within the first week of life between January 2008 and December 2022. Subjects were categorized by birth year into three periods: 2008–2012 (early), 2013–2017 (middle), and 2018–2022 (late). Survival-to-discharge rates were calculated for each period. For infants discharged alive from the center in the late period, data were collected on the number of emergency department (ED) visits and hospital admissions via ED within one year after discharge, reasons for admission, and age at death when applicable. Continuous variables are expressed as medians (range). Results: Of 90 infants admitted during the study period, 3 with unknown outcomes were excluded, leaving 87 for analysis. Survival-to-discharge rates were 43%, 75%, and 59% in the early (n=30), middle (n=28), and late (n=29) periods, respectively (Figure 1). Among 16 survivors discharged alive in the late period (Table 1), 13 (81%) had at least one ED visit, with a median of 2 visits (range, 0–9) (Figure 2). Eleven infants (69%) were admitted via ED within one year after discharge, with a median of 1 admission (range, 0–6). Of 35 total admissions via ED, 21 (60%) were due to respiratory infections, 11 (31%) to urinary tract infections, 2 (6%) to gastrointestinal symptoms, and 1 (3%) to unspecified illness. During the first year after discharge, eight infants required ICU admission; two died—one at 1.2 years of age due to heart failure and arrhythmia, and another at 1.9 years due to airway obstruction.
Conclusion(s): With improved survival to discharge, more infants with trisomy 18 require frequent ED visits and hospitalizations during the first year after discharge. An integrated hospital–community support system is essential to ensure continuous care and improve the quality of life for these infants and their families.
