Chronic Pancytopenia Due to Centrally Mediated Hypothermia in Two Children with Severe Neurological Impairment

We report on recurrent pancytopenia over five years in two children with severe impairment of the central nervous system. Assessment by hematology did not identify an etiology, including bone marrow biopsy in one. Both patients had sustained normalized blood cell counts following interventions to maintain or return to a temperature above 33 °C. Acute cytopenias following medically induced and environmental hypothermia have been reported. Recurrent pancytopenia due to centrally mediated hypothermia in patients with severe neurological impairment is often not recognized, putting such children at risk for unnecessary testing and transfusions. We provide a practical approach to management that is feasible for caregivers in the home setting with suggestions for monitoring

Medical Diagnoses and Associated Characteristics of Neonatal Intensive Care Unit Infants Enrolled in the Giving Parents Support Study

Background: Children’s National Health System (CNHS) has a number of research studies being performed in the Neonatal Intensive Care Unit (NICU), including Giving Parents Support (GPS), a randomized controlled trial of parent navigation after NICU discharge. As a Level IV NICU, CNHS provides care to the sickest infants with a wide range of medical complexity. Objective: To describe the medical diagnoses and associated characteristics of NICU infants enrolled in GPS. Methods: Participants in the GPS study were enrolled from January 2016 to February 2017, and no infants were excluded due to diagnostic criteria. Approximately 300 infants were enrolled, and medical diagnoses were collected from the Children’s Hospitals Neonatal Database and classified by organ system; data was provided on 86% of GPS infants (n=257). Associated characteristics, such as infant sex and gestational age (GA), were obtained via chart review. Diagnoses belonging to preterm (\u3c37 weeks GA) and term (37+ weeks GA) infants were categorized separately. Results: Most infants were male (68%), full-term (55%), and diagnosed with at least one respiratory condition (58%); the majority of those in the latter group (83%) had respiratory distress syndrome (RDS). [KF1] [MC2] Of the 115 premature infants reviewed, 12% were diagnosed with bronchopulmonary dysplasia (BPD), 9% were diagnosed with intraventricular hemorrhage, 2% were diagnosed with periventricular leukomalacia, and 13% were diagnosed with necrotizing enterocolitis. Of the 142 term infants reviewed, 5% were diagnosed with hypoxic-ischemic encephalopathy (HIE) and 11% were diagnosed with seizure. Less than 1% of term infants received extracorporeal membrane oxygenation. Conclusion: Medical diagnoses among GPS infants were variable, although most had a respiratory diagnosis of RDS. The most common diagnosis among preterm and term infants was BPD and seizure, respectively

Simulation for Neonatal Endotracheal Intubation Training: How Different Is It From Clinical Practice?

INTRODUCTION: Neonatal endotracheal intubation is a critical skill that is difficult for learners to acquire even with simulation-based training (SBT). Trainees prefer clinical experiences over SBT. The objective of the study was to explore the differences between SBT and clinical practice in acquiring neonatal intubation skills to inform mannequin design and to improve fidelity. METHODS: A basic qualitative study using semistructured interviews was conducted to determine the experience of newly competent trainees (second- and third-year neonatal-perinatal medicine fellows) and their instructors in developing intubation skills. Participants were asked to compare learning through SBT with clinical practice in terms of context, equipment, and environment. Their responses were analyzed using an inductive approach. RESULTS: Thirty-two participants (20 fellows and 12 faculty) indicated that SBT does not equal the real experience. Specifically, the look, feel, and function of the simulators differ enough from the real patient and the clinical environmental that they do not elicit the desired learning responses. The clinical environment prompted heightened emotions and had a chaotic atmosphere that was not fully captured by SBT. Participants suggested that programs use SBT in the initial phases of training only to gain basic skills and they provided several solutions for mannequin and SBT session design. CONCLUSIONS: Simulation-based training does not fully prepare neonatal-perinatal medicine fellows for neonatal intubation. Mannequins with unique active features, such as multiple airway configurations, slipperiness, secretions, and softer textures should be developed. Realistic environments that replicate the interprofessional nature and stressors of the clinical environment might better prepare learners for the complexity of clinical practice

Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent\u27s understanding of their child\u27s illness, goals of care, and what mattered most to their child from the parent\u27s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease

Length of Stay and Barriers to Discharge for Technology-Dependent Children During the COVID-19 Pandemic

BACKGROUND AND OBJECTIVE: During the coronavirus disease 2019 pandemic, technology-dependent children are at risk of encountering barriers to hospital discharge because of limits to in-home services. Transition difficulties could increase length of stay (LOS). With this study, we aim to (1) evaluate change in LOS and (2) describe barriers to hospital discharge between prepandemic and early pandemic periods for technology-dependent children. METHODS: A retrospective chart review of technology-dependent children discharged from an acute and specialty pediatric hospital within a single urban area between January 1 and May 28, 2020 was conducted. Technology dependence was defined by using a validated complex chronic condition coding system. Patients discharged prepandemic and during the pandemic were compared. Outcomes included LOS and the number and type of discharge barriers (a factor not related to a medical condition that delays discharge). Multivariate regression modeling and parametric and nonparametric analysis were used to compare cohorts. RESULTS: Prepandemic, 163 patients were discharged, and 119 were discharged during the early stages of the pandemic. The most common technology dependence was a feeding tube. The unadjusted median LOS was 7 days in both groups. After adjusting for patient-level factors, discharge during the pandemic resulted in a 32.2% longer LOS (confidence interval 2.1%-71.2%). The number of discharge barriers was high but unchanged between cohorts. Lack of a trained caregiver was more frequent during the pandemic (P = .03). CONCLUSIONS: Barriers to discharge were frequent for both cohorts. Discharge during the pandemic was associated with longer LOS. It was more difficult to identify a trained caregiver during the pandemic

Parental resilience and psychological distress in the neonatal intensive care unit

OBJECTIVE: To evaluate the associations between parental resilience and psychological distress during the neonatal intensive care unit (NICU) hospitalization. STUDY DESIGN: Observational cohort study of parents of preterm infants (n = 45) admitted to a NICU between December 2017-October 2019. Data on resilience and psychological distress were collected using validated scales. Regression analysis was used to evaluate associations. RESULT: One-third of NICU parents screened positive for depression or anxiety. There were no identified sociodemographic factors or parental engagement activities associated with resilience. Parents with higher resilience had lower scores on depression and anxiety screens. However, resilience alone was not a predictor for a positive depression or anxiety screen (aOR 0.93, CI 0.86-1.00; aOR 0.95, CI 0.89-1.02, respectively). CONCLUSION: Resilience may be associated with lower scores on depression and anxiety screens but is not an independent predictor for a positive screen during the early NICU hospitalization

Giving parents support: a randomized trial of peer support for parents after NICU discharge

BackgroundPeer support during inpatient hospitalization has been recommended for NICU parents and can improve maternal mental health. Less is known about the impact of peer support after NICU discharge on parental mental health and infant healthcare utilization.MethodsThree hundred families of infants approaching discharge from a Level IV NICU were randomized to receive a care notebook (control) or care notebook plus peer support for 12 months (intervention). Participants reported on measures of stress, depression, anxiety, self-efficacy, and infant healthcare utilization. Analysis compared outcomes between control and treatment groups.ResultsParental depression, anxiety, stress, and self-efficacy improved significantly for all participants, yet there were no differences between control and intervention groups. Infant ED visits, hospitalizations, immunization status, and developmental status at 12 months did not differ between groups.ConclusionsPeer support after NICU discharge did not improve self-reported parental mental health measures or infant healthcare utilization.Clinical trial registrationNCT02643472