Major anomalies and birth-weight influence NICU interventions and mortality in infants with trisomy 13 or 18

Abstract

Objective to describe neonatal intensive care unit (NICU) medical interventions and NICU mortality by birth weight and major anomaly types for infants with trisomy 13 (T13) or 18 (T18). Study Design retrospective cohort analysis of infants with T13 or T18 from 2005–12 in the Pediatrix Medical Group. We classified infants into 3 groups by associated anomaly type: neonatal surgical, non-neonatal surgical, and minor. Outcomes were NICU medical interventions and mortality. Results 841 infants were included from 186 NICUs. NICU mortality varied widely by anomaly type and birth weight, from 70% of infants <1500g with neonatal surgical anomalies to 31% of infants ≥2500g with minor anomalies. Infants ≥1500g without a neonatal surgical anomaly comprised 66% of infants admitted to the NICU; they had the lowest rates of NICU medical interventions and NICU mortality. Conclusions Risk stratification by anomaly type and birth weight may help provide more accurate family counseling for infants with T13 and T18.

Prenatal and Postnatal Follow-up in Trisomies 13 and 18: A 20-Year Experience in a Tertiary Center

“…Male gender, cardiovascular abnormalities, prematurity, and very low birth weight negatively affect survival. 6,8,24,28 In keeping with those studies, we found that survival rates were significantly lower in infants with birth weight of <2,000 g and who had more than two anomalies (p ¼ 0.001).…”

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

“…Recently, more infants are receiving medical interventions, and survival for more than a year is not uncommon, leading to a recommendation to avoid calling these conditions “lethal.” 1 We have previously reported that parents who lived with children with T13-18 experienced significant emotional and financial hardships, but that they also reported many positive experiences. 2–4…”

“…1 We have previously reported that parents who lived with children with T13-18 experienced significant emotional and financial hardships, but that they also reported many positive experiences. [2][3][4] T13-18 are heterogeneous conditions: some children will die within weeks, despite attempts at life-saving interventions, while others may survive for several months or years, even with comfort care. Medical or surgical interventions, which may sometimes be beneficial, can also at times be a burden.…”

NICU management and outcomes of infants with trisomy 21 without major anomalies

“…T21 is a discretely coded diagnosis. As described in our prior work, 8 we manually reviewed all diagnoses and categorized major anomalies similar to reports from the Vermont Oxford Network 9 and National Institute of Child Health and Development (NICHD) Neonatal Research Network. 10 If an infant had more than one anomaly, each was coded separately.…”