Clinician Perceptions of the NICU Infant Experience: Is the NICU Hospitalization Traumatic?

OBJECTIVE: Infants cared for in a newborn intensive care unit (NICU) experience pain, parental separation, and stress that may approach toxic levels, thus are potentially traumatic. Lack of accepted clinical terminology to describe the infant experience may result in under appreciation of NICU hospitalization on infant and family outcomes. This study explored NICU clinician perceptions of the infant experience and how the terms trauma/traumatic would impact their clinical roles and practices. STUDY DESIGN: Semistructured focus group interviews and thematic analysis were used to describe professionals' perceptions of the infant's experience and terminology. Focus groups were organized by professional role, including NICU leadership, physicians, nurses, and ancillary providers. RESULT: Six themes emerged from the qualitative analysis: at our mercy, trauma defined and redefined, and now you have broken them too, perceptions of NICU experience change over time, trauma in the NICU: whose trauma is it, and not knowing the infant and family experience. CONCLUSION: While recognizing potentially toxic infant stress levels, clinicians are reluctant to describe the NICU infant experience as traumatic. Hesitations relate to clinicians' personal concerns that they may be seen as agents of trauma and the impact for families if the NICU experience was described as traumatic by clinicians.

UNPACKING THE BURDEN OF CARE FOR INFANTS IN THE NICU.

Infants who begin early life in the medicalized environment of the neonatal intensive care unit (NICU) experience disruption to numerous fundamental expectancies. In the NICU, infants are exposed to chronic, extreme stressors that include painful medical procedures and parental separation. Due to their preverbal stage of development, infants are unable to fully express these experiences, and linking these experiences to long-term outcomes has been difficult. This clinical article proposes the terminology Infant Medical Trauma in the NICU (IMTN) to describe the infant experience. Following a discussion of the NICU as an adverse childhood event, the article has three sections: (a) the unique and critical factors that define the newborn period, (b) a review of the IMTN conceptual model, and (c) recommendations for supportive neuroprotective strategies to moderate the intensity of adverse NICU infant experiences.

End-of-life care in the neonatal intensive care unit: experiences of staff and parents.

OBJECTIVE: The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team. STUDY DESIGN: This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n = 14), advanced practitioners (n = 40), and nurses (n = 184) at Connecticut Children's Medical Center's neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n = 28). RESULTS: The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses include modalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up. CONCLUSION: End-of-life experiences in the NICU were perceived as variable and end-of-life practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care team could help. Families desire memory making, follow-up, and bereavement support.

Novel Implementation of State Reporting Policy for Substance-Exposed Infants.

BACKGROUND: The Child Abuse Prevention and Treatment Act's provisions concerning hospitalist and child protective services response to infants with prenatal substance exposure (IPSE) were revised in 2016 to address the impact of the opioid epidemic. In 2019, Connecticut unveiled a statewide hospital reporting infrastructure to divert IPSE without safety concerns from CPS using a deidentified notification to CPS and a plan of safe care (POSC). Connecticut is the first state to implement a separate, deidentified notification system. METHODS: We used notification and birth data to determine rates per 1000 births. We employed multinomial logistic regression to understand factors associated with 3 mutually exclusive outcomes: (1) diversion with POSC, (2) report with POSC, or (3) report without POSC. RESULTS: During the first 28 months of policy implementation, hospitalists submitted over 4700 notifications (8% of total Connecticut births). Over three-quarters (79%) of notifications included marijuana exposure, and 21% included opioid exposure. Fewer than 3% included alcohol exposure. Black mothers were disproportionally overrepresented among notifications compared with the state population, and all other race groups underrepresented. Over half of identified IPSE were diverted. Type of substance exposure was the strongest predictor of outcome, controlling for maternal age and race group. CONCLUSIONS: Connecticut Child Abuse Prevention and Treatment Act diverted IPSE without provider safety concerns away from child protective services. Substance exposure type was associated with the dyad's outcome at hospital discharge. Nonuniversal screening practices may contribute to racial disproportionality in implementation.

Utility of rapid whole-exome sequencing in the diagnosis of Niemann-Pick disease type C presenting with fetal hydrops and acute liver failure.

Rapid whole-exome sequencing (rWES) is used in critically ill newborn infants to inform about diagnosis, clinical management, and prognosis. Here we report a male newborn infant with hydrops, pancytopenia, and acute liver failure who was listed for liver transplantation. Given the acuity of the presentation, the procedure-related morbidity and mortality, and lack of diagnosis, we used rWES in the proband and both parents with a turnaround time of 10 business days. rWES returned one maternally inherited, likely pathogenic and one paternally inherited, likely pathogenic variant in NPC1, suggestive of a diagnosis of Niemann-Pick disease type C (NPC). Interestingly, a diagnosis of NPC was entertained prior to rWES, but deemed unlikely in light of absent cholesterol storage on liver biopsy and near-normal oxysterol levels in dried blood. The diagnosis of NPC was confirmed on filipin stain in fibroblasts demonstrating defective cholesterol trafficking. NPC is a slowly progressive neurodegenerative disorder that may also affect the liver with overall poor prognosis. It was decided to take the infant off the transplant list and transfer to palliative care, where he died after 4 wk. This case highlights the utility of rWES in an acute clinical setting for several domains of precision medicine including (1) diagnosis, (2) prognosis and outcome, (3) management and therapy, and (4) utilization of resources.

Molecular characterization of recombinant Pneumocystis carinii topoisomerase I: differential interactions with human topoisomerase I poisons and pentamidine.

The Pneumocystis carinii topoisomerase I-encoding gene has been cloned and sequenced, and the expressed enzyme interactions with several classes of topoisomerase I poisons have been characterized. The P. carinii topoisomerase I protein contains 763 amino acids and has a molecular mass of ca. 90 kDa. The expressed enzyme relaxes supercoiled DNA to completion and has no Mg2+ requirement. Cleavage assays reveal that both the human and P. carinii enzymes form covalent complexes in the presence of camptothecin, Hoechst 33342, and the terbenzimidazole QS-II-48. As with the human enzyme, no cleavage is stimulated in the presence of 4',6'-diamidino-2-phenylindole (DAPI) or berenil. A yeast cytotoxicity assay shows that P. carinii topoisomerase I is also a cytotoxic target for the mixed intercalative plus minor-groove binding drug nogalamycin. In contrast to the human enzyme, P. carinii topoisomerase I is resistant to both nitidine and potent protoberberine human topoisomerase I poisons. The differences in the sensitivities of P. carinii and human topoisomerase I to various topoisomerase I poisons support the use of the fungal enzyme as a molecular target for drug development. Additionally, we have characterized the interaction of pentamidine with P. carinii topoisomerase I. We show, by catalytic inhibition, cleavage, and yeast cytotoxicity assays, that pentamidine does not target topoisomerase I.