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To describe parent-reported barriers and facilitators to reading to preterm-born infants, both in the neonatal intensive care unit (NICU) and at home. We hypothesized that families of preterm infants face unique barriers previously not described in the literature, and that understanding barriers from the parent perspective will uncover strategies for improving the NICU environment and cognitive home environment and allow refinement of current reading programs.We performed a qualitative study of parents of 0 to 12 month corrected age infants presenting to neonatal follow-up clinic. Infants were born33 weeks gestational age or with birth weight ≤1500 grams. Parents completed a semistructured interview about reading practices. Answers to open-ended questions were coded to highlight key themes.We reached thematic saturation after interviewing 23 parents of 28 infants. Parent-generated items about barriers and facilitators to reading in the NICU and at home were each coded into 4 themes. Competing responsibilities and believing that reading was developmentally inappropriate were 2 shared themes for barriers to reading in both the NICU and home environment. Support people and understanding developmental impact were 2 shared themes for facilitators to reading in both the NICU and home environment.This qualitative work elucidates new targets for novel programs intended to support cognitive development of high-risk preterm infants. Addressing the unique, parent-reported barriers that we have identified and supporting adoption of the facilitators could increase word exposure for preterm infants, starting in the NICU and continuing at home.

BACKGROUND: Timely development of early motor skills is essential for later skill development in multiple domains. Infants with severe bronchopulmonary dysplasia (BPD) have significant risk for developmental delays. Early motor skill development in this population has not been described. The aim of the present study was to characterize motor skill acquisition at 3 and 6 months corrected age (CA) and assess trajectories of skill development over this time period in infants with severe BPD. METHODS: We performed a single-center, retrospective descriptive study. Motor skills were categorized as present and normal, present but atypical, or absent at 3 and 6 months CA. Logistic regression was used to identify clinical characteristics associated with negative trajectories of skill acquisition. RESULTS: Data were available for 232 infants and 187 infants at 3 and 6 months CA, respectively. Ten motor skills were present and normal in 5–44%(range) of subjects at 3 months. Nineteen motor skills were present and normal in 1–63%(range) of subjects at 6 months. Significant postural asymmetry was noted throughout the study period. Loss of skills and worsening asymmetries over time were common. Exposure to sedating medications was significantly associated with poor development. CONCLUSION: We report delays in motor skill acquisition and postural asymmetries in infants with severe BPD at both 3 and 6 months CA. The association between sedating medications and poor development suggests that efforts to limit these exposures may lead to improved development. Targeted interventions to facilitate early motor development may improve outcomes of this high-risk population.

ImportanceLate-onset meningitis (LOM) has been associated with adverse neurodevelopmental outcomes in children born extremely preterm.ObjectiveTo report the incidence of LOM during birth hospitalization and neurodevelopmental outcomes at 18 to 26 months’ corrected age.Design, Setting, and ParticipantsThis cohort study is a secondary analysis of a multicenter prospective cohort of children born at 22 to 26 weeks’ gestation between 2003 and 2017 with follow-up from 2004 to 2021. The study was conducted at 25 Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network centers.ExposuresCulture-confirmed LOM.Main Outcomes and MeasuresIncidence and microbiology of LOM (2003-2017); lumbar puncture (LP) performance in late-onset sepsis (LOS) evaluations (2011-2017); composite outcome of death or neurodevelopmental impairment (NDI; 2004-2021).ResultsAmong 13 372 infants (median [IQR] gestational age, 25.4 [24.4-26.1] weeks; 6864 [51%] boys), LOM was diagnosed in 167 (1%); LOS without LOM in 4564 (34%); and neither LOS nor LOM in 8641 (65%). The observed incidence of LOM decreased from 2% (95% CI, 1%-3%) in 2003 to 0.4% (95% CI, 0.7%-1.0%) in 2017 (P P P = .008). LP performance varied by center among all LOS evaluations (10%-59%, P P Staphylococcus (98 [59%]), Candida albicans (38 [23%]), and Escherichia coli (27 [16%]). Death or NDI occurred in 22 of 46 children (48%) with LOM due to coagulase-negative Staphylococcus, 43 of 67 (64%) due to all other bacterial pathogens, and 26 of 33 (79%) due to fungal pathogens. The adjusted relative risk of death or NDI was increased among children with LOM (aOR, 1.53; 95% CI, 1.04-2.25) and among those with LOS without LOM (aOR, 1.41; 95% CI, 1.29-1.54) compared with children with neither infection.Conclusions and RelevanceIn this cohort study, LP was performed with decreasing frequency, and the observed incidence of LOM also decreased. Both LOM and LOS were associated with increased risk of death or NDI; risk varied by LOM pathogen. The full association of LOM with outcomes of children born extremely preterm may be underestimated by current diagnostic practices.

Objective Coronavirus disease 2019 (COVID-19) continues to have a profound impact on infant health care and health outcomes. In this study, we aimed to characterize the social impact of the first COVID-19 lockdown on families in a neonatal follow-up program (NFP). Given the ongoing increased use of telehealth across the medicine, we also evaluated for patient-level differences in virtual visit rates to identify patients at risk of follow-up challenges. Study Design To assess the impact of virtual health care utilization, we conducted a retrospective cohort study to describe challenges associated with telemedicine use in this vulnerable patient population during our telemedicine epoch (March 13, 2020–July 31, 2020). We also looked for patient-level factors associated with attending NFP visits as scheduled. Finally, we summarized caregiver responses to a COVID-19 Obstacles Assessment Survey and assessed for racial disparities in these responses. Results When comparing patients who completed their virtual visit to those who did not, we found no differences by infants' sex, birthweight, gestational age at birth, or caregiver self-reported race and ethnicity. However, infants whose visits did not occur were more often discharged with equipment or covered by public insurance. Nine percent of families reported food insecurity. Conclusion During the initial COVID-19 lockdown, families with infants discharged from a neonatal intensive care unit (NICU) faced significant obstacles caring for their infants and attending scheduled follow-up visits. Infants in families with lower socioeconomic status or with increased medical complexity faced increased challenges in attending virtual follow-up visits during this epoch. Given the ongoing reliance on telemedicine in health care and the need to better prepare for future epidemics/pandemics, this study offers critical information that can assist neonatal teams in bolstering transitions to home and creating stronger safety nets for their patients after discharge. Key Points

Context The relationship between quality of Goals of Care (GOC) conversations and moral distress among neonatal intensive care unit (NICU) providers is not known. Objectives We sought 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress changes in relation to GOC discussions, and 3) to identify elements of GOC discussions associated with change in moral distress. We hypothesized that staff moral distress would change after GOC discussions and that change would vary with presence of key discussion elements. Methods Prospective cohort study in a level IV NICU in an urban teaching hospital. We administered validated instruments at baseline and following GOC discussions including the Moral Distress Thermometer (MDT) and Williams Instrument (a measure of end-of-life care) to physicians, nurses, and social workers. Results We collected data on 79 GOC conversations over a 1-year period from 2018 to 2019. Most providers experienced an increase in moral distress following a GOC discussion. Providers experienced an average increase in moral distress, as measured by the MDT, of 0.84 (+/-3.15; P = 0.002). Physicians experienced an average change in moral distress of 1.1 (+/-3.52; P = 0.01) while nurses experienced an average change of 0.55 (+/-2.66; P = 0.07). Several elements of discussions were associated with the degree of increase in moral distress after the conversation. Conclusion Change in moral distress among providers may be a useful metric of quality of GOC discussions. There are identifiable elements of GOC conversations that are associated with high-quality discussions. These elements warrant further study.

OBJECTIVE Describe survival and decannulation following infant tracheostomy based on indication for tracheostomy placement. STUDY DESIGN Retrospective cohort study of infants who received tracheostomy at a single pediatric hospital over a twelve-year period. Primary and secondary indications were categorized into pulmonary, anatomic, cardiac, neurologic/musculoskeletal, and others. RESULTS A total of 378 infants underwent tracheostomy; 323 had sufficient data to be included in analyses of post-discharge outcomes. Overall mortality was 26.3%; post-operative and post-discharge mortality differed across primary indications (P = 0.03 and P = 0.005). Among survivors, 69.3% decannulated at a median age of 3.0 years (IQR 2.3, 4.5 years). Decannulation among survivors varied across primary indications (P = 0.002), ranging from 17% to 75%. In multivariable analysis, presence of a neurologic or musculoskeletal indication for tracheostomy was a significant negative predictor of future decannulation (aOR 0.10 [95% CI 0.02-0.44], P = 0.003). CONCLUSIONS Early childhood outcomes vary across indications for infant tracheostomy.

Despite improvements in the care and outcomes of infants born extremely preterm, bronchopulmonary dysplasia (BPD) remains a common and frustrating complication of prematurity. This review summarizes the BPD-focused research conducted by the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network (NRN). To improve disease classification and outcome prediction, the NRN developed new data-driven diagnostic criteria for BPD and web-based tools that allow clinicians and investigators to reliably estimate BPD risk in preterm infants. Randomized trials of intramuscular vitamin A and prophylactic nasal continuous positive airway pressure conducted by the NRN have contributed to our current use of these therapies as evidence-based approaches to reduce BPD risk. A recent large, randomized trial of hydrocortisone administered beginning between the 2

Follow-up studies are essential for understanding outcomes and informing the care of infants with high risk for medical and developmental consequences because of extreme prematurity or perinatal illness. Studies that extend to school age often identify sequelae that go unrecognized in neonatal or short-term follow-up studies. Many critical neurocognitive, behavioral, functional, and health outcomes are best assessed beginning at school age. The Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network (NRN) has performed comprehensive school age evaluations of several key trial cohorts. This manuscript summarizes the important contributions of school age follow-up studies in the NRN, both historically and in ongoing research. We describe in detail the clinical questions that have been answered by the completed studies and new questions about the outcomes of high-risk infants that must be addressed by ongoing and future studies.

Recent contributions of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network (NRN) regarding obstetrical perinatal interventions and neonatal delivery room practices include the following: the impact of multiple antepartum factors including maternal diabetes, hypertension, obesity and mode of delivery on outcomes of extremely preterm newborns, effects of delayed delivery interval for extremely preterm multiples, effects of antenatal steroids on preterm newborn outcomes and the impact of antenatal magnesium sulfate therapy on neurodevelopmental outcomes for extremely preterm infants. NRN studies also contribute important evidence for neonatal delivery room resuscitation guidelines including umbilical cord management and maintenance of euthermia immediately after birth. The updated NRN outcome calculator helps better counsel families regarding possible outcomes for the most immature newborns if resuscitation is attempted at birth. Thus, the NRN provides substantial information regarding effects of perinatal management on newborn infants.

OBJECTIVE: This study evaluates the 24 month follow up for the NICHD Neonatal Research Network (NRN) Inositol for Retinopathy Trial. STUDY DESIGN: Bayley Scales of Infants Development-III and a standardized neurosensory examination were performed in infants enrolled in the main trial. Moderate/severe NDI was defined as BSID-III Cognitive or Motor composite score

ObjectiveDetermine risk of death or neurodevelopmental impairment (NDI) in infants with late-onset sepsis (LOS) versus late-onset, antibiotic-treated, blood culture-negative conditions (LOCNC).DesignRetrospective cohort study.Setting24 neonatal centres.PatientsInfants born 1/1/2006–31/12/2014, at 22–26 weeks gestation, with birth weight 401–1000 g and surviving >7 days were included. Infants with early-onset sepsis, necrotising enterocolitis, intestinal perforation or both LOS and LOCNC were excluded.ExposuresLOS and LOCNC were defined as antibiotic administration for ≥5 days with and without a positive blood/cerebrospinal fluid culture, respectively. Infants with these diagnoses were also compared with infants with neither condition.OutcomesDeath or NDI was assessed at 18–26 months corrected age follow-up. Modified Poisson regression models were used to estimate relative risks adjusting for covariates occurring ≤7 days of age.ResultsOf 7354 eligible infants, 3940 met inclusion criteria: 786 (20%) with LOS, 1601 (41%) with LOCNC and 1553 (39%) with neither. Infants with LOS had higher adjusted relative risk (95% CI) for death/NDI (1.14 (1.05 to 1.25)) and death before follow-up (1.71 (1.44 to 2.03)) than those with LOCNC. Among survivors, risk for NDI did not differ between the two groups (0.99 (0.86 to 1.13)) but was higher for LOCNC infants (1.17 (1.04 to 1.31)) compared with unaffected infants.ConclusionsInfants with LOS had higher risk of death, but not NDI, compared with infants with LOCNC. Surviving infants with LOCNC had higher risk of NDI compared with unaffected infants. Improving outcomes for infants with LOCNC requires study of the underlying conditions and the potential impact of antibiotic exposure.

Background: Clinical measures after birth and studies such as electroencephalogram (EEG) and brain imaging do not fully predict neurodevelopmental outcomes of infants with hypoxic-ischemic encephalopathy. Early detection of adverse neurologic outcomes, and cerebral palsy in particular, in high-risk infants is essential for ensuring timely management. The General Movements Assessment is a tool that can be used in the early detection of cerebral palsy in infants with brain injury. The majority of studies on the General Movements Assessment in the late preterm and term population were performed prior to the introduction of therapeutic hypothermia. Aims: To apply the General Movements Assessment in late preterm and term infants with hypoxic-ischemic encephalopathy (including those who received therapeutic hypothermia), to determine if clinical markers of hypoxic-ischemic encephalopathy predict abnormal General Movements Assessment findings, and to evaluate interrater reliability of the General Movements Assessment in this population. Study design: Pilot prospective cohort study Subjects: We assessed 29 late preterm and full-term infants with mild, moderate, and severe hypoxic-ischemic encephalopathy in Philadelphia, PA. Results: Most infants’ general movements normalized by the fidgety age. Only infants with moderate or severe hypoxic-ischemic encephalopathy had abnormal general movements in both the writhing and the fidgety ages (n = 6). Seizure at any point during the initial hospitalization was the clinical sign most predictive of abnormal general movements in the fidgety age (sensitivity 100%, specificity 55%, positive predictive value 40%, negative predictive value 100%). Interrater reliability was greatest during the fidgety age (κ = 0.67). Conclusions: Seizures were the clinical predictor most closely associated with abnormal findings on the General Movements Assessment. However, clinical markers of hypoxic-ischemic encephalopathy are not fully predictive of abnormal General Movements Assessment findings. Larger future studies are needed to evaluate the associations between the General Movements Assessment and childhood neurologic outcomes in patients with hypoxic-ischemic encephalopathy who received therapeutic hypothermia.

ObjectiveTo compare death or severe neurodevelopmental impairment (NDI) at 22–26 months’ corrected age (CA) among extremely preterm infants following exposure to different forms of umbilical cord management.DesignRetrospective study.SettingEunice Kennedy ShriverNational Institute of Child Health and Human Development Neonatal Research Network registry.PatientsInfants born ExposuresImmediate cord clamping (ICC), delayed cord clamping (DCC) or umbilical cord milking (UCM).Main outcomes and measurePrimary composite outcome of death or severe NDI at 22–26 months’ CA, defined as severe cerebral palsy, Bayley-III cognitive/motor composite score ResultsAmong 1900 infants, 64.1% were exposed to ICC, 27.8% to DCC and 8.1% to UCM. Compared with ICC-exposed infants, DCC-exposed infants had lower odds of death or severe NDI (adjusted OR 0.64, 95% CI 0.50 to 0.83). No statistically significant differences were observed when comparing UCM with either ICC or DCC, or between secondary outcomes across groups. Association between cord management and the primary outcome was not mediated by severe IVH.ConclusionCompared with ICC, DCC exposure was associated with lower death or severe NDI at 22–26 months’ CA among extremely preterm infants, which was not mediated by severe IVH.

Background This study was performed to determine the incidence of group B Streptococcus (GBS) disease among extremely preterm infants and assess to risk of death or neurodevelopmental impairment (NDI) at a corrected age of 18–26 months. Methods In this observational cohort study of infants enrolled in a multicenter registry, the incidence of GBS disease was assessed in infants born in 1998–2016 at 22–28 weeks’ gestation and surviving for >12 hours. The composite outcome, death or NDI, was assessed in infants born in 1998–2014 at 22–26 weeks’ gestation. Infection was defined as GBS isolation in blood or cerebrospinal fluid culture at ≤72 hours (early-onset disease [EOD]) or >72 hours (late-onset disease [LOD]) after birth. Using Poisson regression models, the outcome was compared in infants with GBS disease, infants infected with other pathogens, and uninfected infants. Results The incidence of GBS EOD (2.70/1000 births [95% confidence interval (CI), 2.15–3.36]) and LOD (8.47/1000 infants [7.45–9.59]) did not change significantly over time. The adjusted relative risk of death/NDI was higher among infants with GBS EOD than in those with other infections (adjusted relative risk, 1.22 [95% CI, 1.02–1.45]) and uninfected infants (1.44 [1.23–1.69]). Risk of death/NDI did not differ between infants with GBS LOD and comparator groups. GBS LOD occurred at a significantly later age than non-GBS late-onset infection. Among infants surviving >30 days, the risk of death was higher with GBS LOD (adjusted relative risk, 1.90 [95% CI, 1.36–2.67]), compared with uninfected infants. Conclusions In a cohort of extremely preterm infants, the incidence of GBS disease did not change during the study period. The increased risk of death or NDI with GBS EOD, and of death among some infants with GBS LOD, supports the need for novel preventive strategies for disease reduction. Clinical Trials Registration NCT00063063.

Objective: Assessing vocal cord mobility by flexible nasolaryngoscopy (FNL) can be difficult in neonates. To date, prospective studies evaluating the incidence and diagnostic accuracy of vocal cord paralysis (VCP) after surgical patent ductus arteriosus (PDA) ligation are limited. It is unknown whether video FNL improves diagnosis in this population. This study compared video recordings with bedside evaluation for diagnosis of VCP and determined inter-rater reliability of the diagnosis of VCP in preterm infants after PDA ligation. Methods: Prospective cohort of preterm neonates undergoing bedside FNL within two weeks of extubation following PDA ligation. In a subset, FNL was recorded. Two pediatric otolaryngologists, blinded to the initial diagnosis, reviewed the FNL video recordings. Results: Eighty infants were enrolled and 37 with a recorded FNL were included in the cohort. Average gestational age at birth was 25.2 weeks (SD: 1.2) and postmenstrual age at FNL was 37.0 weeks (SD: 4.5), which was 9.5 days (SD: 14.7) after extubation following PDA repair. There were 6 diagnosed with left VCP (16.2%; 95% CI: 4.3-28.1%) at bedside, and 9 diagnosed by video review (24.3%; 95% CI: 10.5-38.1%) ( P = .56). Videos confirmed all 6 VCP diagnosed initially, but also identified 3 additional cases. Though imperfect, reviewing FNL by video showed substantial reliability (kappa = .75), with 91.9% agreement. Conclusion: Video recorded FNL most often confirms a bedside diagnosis of VCP, but may also identify discrepancies. Physicians should consider the limitations of diagnosis especially when infants persist with symptoms such as weak voice or signs of postoperative aspiration. Level of Evidence 2b

ObjectiveTo compare short-term outcomes after placental transfusion (delayed cord clamping (DCC) or umbilical cord milking (UCM)) versus immediate cord clamping among extremely preterm infants.DesignRetrospective study.SettingTheEunice Kennedy ShriverNational Institute of Child Health and Human Development Neonatal Research Network registry.PatientsInfants born Intervention/exposureDCC or UCM.Main outcome measuresPrimary outcomes: (1) composite of mortality or major morbidity by 36 weeks’ postmenstrual age (PMA); (2) mortality by 36 weeks PMA and (3) composite of major morbidities by 36 weeks’ PMA. Secondary composite outcomes: (1) any grade intraventricular haemorrhage or mortality by 36 weeks’ PMA and (2) hypotension treatment in the first 24 postnatal hours or mortality in the first 12 postnatal hours. Outcomes were assessed using multivariable regression, adjusting for mortality risk factors identified a priori, significant confounders and centre as a random effect.ResultsAmong 3116 infants, 40% were exposed to placental transfusion, which was not associated with the primary composite outcome of mortality or major morbidity by 36 weeks’ PMA (adjusted OR (aOR) 1.26, 95% CI 0.95 to 1.66). However, exposure was associated with decreased mortality by 36 weeks’ PMA (aOR 0.71, 95% CI 0.55 to 0.92) and decreased hypotension treatment in first 24 postnatal hours (aOR 0.66, 95% CI 0.53 to 0.82).ConclusionIn this extremely preterm infant cohort, exposure to placental transfusion was not associated with the composite outcome of mortality or major morbidity, though there was a reduction in mortality by 36 weeks’ PMA.Trial registration numberNCT00063063.

This study aimed to evaluate how parents of former neonatal intensive care unit patients with cerebral palsy perceive prognostic discussions following neuroimaging. Parent members of a cerebral palsy support network described memories of prognostic discussions after neuroimaging in the neonatal intensive care unit. We analyzed responses using Linguistic Inquiry and Word Count, manual content analysis, and thematic analysis. In 2015, a total of 463 parents met eligibility criteria and 266 provided free-text responses. Linguistic Inquiry and Word Count analysis showed that responses following neuroimaging contained negative emotion. The most common components identified through the content analysis included outcome, uncertainty, hope/hopelessness, and weakness in communication. Thematic analysis revealed 3 themes: (1) Information, (2) Communication, and (3) Impact. Parents of children with cerebral palsy report weakness in communication relating to prognosis, which persists in parents’ memories. Prospective work to develop interventions to improve communication between parents and providers in the neonatal intensive care unit is necessary.

Bronchopulmonary dysplasia is a prevalent complication after extremely preterm birth. Inflammation with mechanical ventilation may contribute to its development. Whether hydrocortisone treatment after the second postnatal week can improve survival without bronchopulmonary dysplasia and without adverse neurodevelopmental effects is unknown.We conducted a trial involving infants who had a gestational age of less than 30 weeks and who had been intubated for at least 7 days at 14 to 28 days. Infants were randomly assigned to receive either hydrocortisone (4 mg per kilogram of body weight per day tapered over a period of 10 days) or placebo. Mandatory extubation thresholds were specified. The primary efficacy outcome was survival without moderate or severe bronchopulmonary dysplasia at 36 weeks of postmenstrual age, and the primary safety outcome was survival without moderate or severe neurodevelopmental impairment at 22 to 26 months of corrected age.We enrolled 800 infants (mean [±SD] birth weight, 715±167 g; mean gestational age, 24.9±1.5 weeks). Survival without moderate or severe bronchopulmonary dysplasia at 36 weeks occurred in 66 of 398 infants (16.6%) in the hydrocortisone group and in 53 of 402 (13.2%) in the placebo group (adjusted rate ratio, 1.27; 95% confidence interval [CI], 0.93 to 1.74). Two-year outcomes were known for 91.0% of the infants. Survival without moderate or severe neurodevelopmental impairment occurred in 132 of 358 infants (36.9%) in the hydrocortisone group and in 134 of 359 (37.3%) in the placebo group (adjusted rate ratio, 0.98; 95% CI, 0.81 to 1.18). Hypertension that was treated with medication occurred more frequently with hydrocortisone than with placebo (4.3% vs. 1.0%). Other adverse events were similar in the two groups.In this trial involving preterm infants, hydrocortisone treatment starting on postnatal day 14 to 28 did not result in substantially higher survival without moderate or severe bronchopulmonary dysplasia than placebo. Survival without moderate or severe neurodevelopmental impairment did not differ substantially between the two groups. (Funded by the National Institutes of Health; ClinicalTrials.gov number, NCT01353313.).

The American Academy of Pediatrics recommends blood pressure screening at every health care encounter in children younger than 3 years if they have a history of prematurity or other neonatal complications requiring intensive care because these children have an increased risk for hypertension.A multidisciplinary team conducted a quality improvement initiative to improve blood pressure screening at a single-center outpatient neonatal follow-up clinic. We developed a focused intervention program including a standardized blood pressure measurement protocol, staff training and education, and streamlined documentation. We conducted two Plan-Do-Study-Act cycles from November 2019 to January 2021. The outcome measure was the percentage of patients with a blood pressure measurement. Process measures included the percentage of medical assistants educated on the new protocol, percentage of patients 3 years, and younger old with the first blood pressure measurement taken from the right arm, and the percentage of patients 1 year and younger with 3 documented blood pressures. The balancing measure was staff satisfaction with time to obtain vital signs. We used statistical process control charts and Wilcoxon rank-sum test.At baseline, only 15.3% of patients had documented blood pressure. During the 10-month intervention period, there were 954 patient visits. Overall, blood pressure measurement increased to 54.7% with study interventions. The balancing measure was not negatively impacted.After implementing a program of focused interventions, we substantially improved the frequency of blood pressure measurements and increased adherence to American Academy of Pediatrics screening guidelines. Improved blood pressure screening allows us to identify and evaluate at-risk infants after hospital discharge.

Severe retinopathy of prematurity (ROP) is associated with adverse outcomes. Relationships between milder ROP and outcomes have not been defined. We hypothesized that children with ROP stage ≤3 who did not receive ophthalmologic intervention would have worse motor, cognitive, and language skills and more vision abnormalities than children without ROP.This was a secondary analysis of a randomized trial evaluating the effects of myo-inositol on ROP in the NICHD Neonatal Research Network. Primary outcomes were Bayley Scales of Infant Development composite scores; secondary outcomes included behavioral difficulties and ophthalmologic measures. Outcomes were compared using adjusted linear or modified Poisson models.Of 506 children, 173 (34%) had no ROP, 262 (52%) had ROP stage ≤3 without intervention, and 71 (14%) had ROP with intervention. There was no difference in motor, cognitive, or language scores between children with ROP stage ≤3 without intervention and children without ROP. Children with ROP stage ≤3 without intervention had a higher rate of strabismus compared to children without ROP (p = 0.040).Children with ROP stage ≤3 without intervention did not have adverse neurodevelopmental outcomes at 2 years' corrected age compared to children without ROP but did have an increased incidence of strabismus.This study addresses a gap in the literature regarding the relationship between milder forms of retinopathy of prematurity (ROP) that regress without intervention and neurodevelopment and vision outcomes. Children with a history of ROP stage ≤3 without intervention have similar neurodevelopmental outcomes at 2 years' corrected age as children born extremely preterm without a history of ROP and better outcomes than children with a history of ROP with ophthalmologic intervention. Counseling about likely neurodevelopment and vision outcomes for children born extremely preterm with a history of ROP may be tailored based on the severity of ROP.ClinicalTrials.gov ID: Inositol to Reduce Retinopathy of Prematurity Trial: NCT01954082.

INTRODUCTION Pulse oximetry monitoring is prescribed to children receiving home oxygen for chronic medical conditions associated with hypoxemia. Although home pediatric pulse oximetry is supported by national organizations, there is a lack of guidelines outlining indications and prescribing parameters. METHODS A mixed-methods analysis of pediatric home pulse oximetry orders prescribed through the institutional home healthcare provider at a large US children's hospital 6/2018-7/2019 was retrospectively reviewed to determine prescribed alarm parameter limits and recommended interventions. Semi-structured qualitative interviews with pediatric providers managing patients receiving home oxygen and pulse oximetry were conducted to identify opportunities to improve home pulse oximetry prescribing practices. Interviews were analyzed using a modified content analysis approach to identify recurring themes. RESULTS A total of 368 children received home pulse oximetry orders. Orders were most frequently prescribed on noncardiac medical floors (32%). Attending physicians were the most frequent ordering providers (52%). Frequency of use was prescribed in 96% of orders, however, just 70% were provided with specific instructions for interventions when alarms occurred. Provider role and clinical setting were significantly associated with the presence of a care plan. Provider interviews identified opportunities for improvement with the device, management of alarm parameter limits, and access to home monitor data. DISCUSSION This study demonstrated significant variability in home pulse oximetry prescribing practices. Provider interviews highlighted the importance of the provider-patient relationship and areas for improvement. There is an opportunity to create standardized guidelines that optimize the use of home monitoring devices for patients, families, and pulmonary providers.

ImportanceAnti–vascular endothelial growth factor (VEGF) therapy for retinopathy of prematurity (ROP) has potential ocular and systemic advantages compared with laser, but we believe the systemic risks of anti-VEGF therapy in preterm infants are poorly quantified.ObjectiveTo determine whether there was an association with increased risk of pulmonary hypertension (PH) in preterm infants with ROP following treatment with anti-VEGF therapy as compared with laser treatment.Design, Setting, and ParticipantsThis multicenter retrospective cohort study took place at neonatal intensive care units of 48 children’s hospitals in the US in the Pediatric Health Information System database from 2010 to 2020. Participants included preterm infants with gestational age at birth 22 0/7 to 31 6/7 weeks who had ROP treated with anti-VEGF therapy or laser photocoagulation.ExposuresAnti-VEGF therapy vs laser photocoagulation.Main Outcomes and MeasuresNew receipt of pulmonary vasodilators at least 7 days after ROP therapy was compared between exposure groups, matched using propensity scores generated from preexposure variables, and adjusted for birth year and hospital. The odds of receiving an echocardiogram after 30 days of age was also included to adjust for secular trends and interhospital variation in PH screening.ResultsAmong 1577 patients (55.9% male) meeting inclusion criteria, 689 received laser photocoagulation and 888 received anti-VEGF treatment (95% bevacizumab, 5% ranibizumab). Patients were first treated for ROP at median 36.4 weeks’ postmenstrual age (IQR, 34.6-38.7). A total of 982 patients (491 in each group) were propensity score matched. Good covariate balance was achieved, as indicated by a model variance ratio of 1.15. More infants who received anti-VEGF therapy were treated for PH, but when adjusted for hospital and year, this was no longer statistically significant (6.7%; 95% CI, 2.6-6.9 vs 4.3% 95% CI, 4.4-10.2; adjusted odds ratio, 1.62; 95% CI, 0.90-2.89; P = .10).Conclusions and RelevanceAnti-VEGF therapy was not associated with greater use of pulmonary vasodilators after adjustment for hospital and year. Our findings suggest exposure to anti-VEGF may be associated with PH, although we cannot exclude the possibility of residual confounding based on systemic comorbidities or hospital variation in practice. Future studies investigating this possible adverse effect seem warranted.

Background Leukodystrophies are a rare class of disorders characterized by severe neuromotor disability. There is a strong need for research regarding the functional status of people with leukodystrophy which is limited by the need for in-person assessments of mobility. The purpose of this study is to assess the reliability of the Gross Motor Function Measure-88 (GMFM-88) using telemedicine compared with standard in-person assessments in patients with leukodystrophy. Methods A total of 21 subjects with a diagnosis of leukodystrophy (age range = 1.79-52.82 years) were evaluated by in-person and by telemedicine evaluations with the GMFM-88 by physical therapists. Inter-rater reliability was assessed through evaluation of the same subject by two independent raters within a three-week period (n = 10 encounters), and intrarater reliability was assessed through blinded rescoring of video-recorded assessments after a one-week time interval (n = 6 encounters). Results Remote assessments were performed by caregivers in all 21 subjects using resources found in the home with remote guidance. There was agreement between all paired in-person and remote measurements (Lin's concordance correlation ≥0.995). The Bland-Altman analysis indicated that the paired differences were within ±5%. Intrarater and inter-rater reliability demonstrated an intraclass correlation coefficient of >0.90. Conclusions These results support that remote application of the GMFM-88 is a feasible and reliable approach to assess individuals with leukodystrophy. Telemedicine application of outcome measures may be of particular value in rare diseases and those with severe neurologic disability that impacts the ability to travel.

OBJECTIVE: To determine which initial surgical treatment results in the lowest rate of death or neurodevelopmental impairment (NDI) in premature infants with necrotizing enterocolitis (NEC) or isolated intestinal perforation (IP). SUMMARY BACKGROUND DATA: The impact of initial laparotomy versus peritoneal drainage for NEC or IP on the rate of death or NDI in extremely low birth weight infants is unknown. METHODS: We conducted the largest feasible randomized trial in 20 US centers, comparing initial laparotomy versus peritoneal drainage. The primary outcome was a composite of death or NDI at 18–22 months corrected age, analyzed using prespecified frequentist and Bayesian approaches. RESULTS: Of 992 eligible infants, 310 were randomized and 96% had primary outcome assessed. Death or NDI occurred in 69% of infants in the laparotomy group versus 70% with drainage (adjusted relative risk [aRR] = 1.0; 95% confidence interval [CI]: 0.87–1.14). A preplanned analysis identified an interaction between preoperative diagnosis and treatment group (p = 0.03). With a preoperative diagnosis of NEC, death or NDI occurred in 69% after laparotomy versus 85% with drainage (aRR=0.81; 95% CI: 0.64 to 1.04). The Bayesian posterior probability that laparotomy was beneficial (risk difference

OBJECTIVES The objectives of this study are to determine whether abnormalities on neonatal cranial ultrasound (CUS) are associated with minor motor abnormalities at 2 years' corrected age (CA) and to assess functional outcomes and resource utilization among children with minor motor abnormalities. METHODS Infants born at

Rationale: Current diagnostic criteria for bronchopulmonary dysplasia rely heavily on the level and duration of oxygen therapy, do not reflect contemporary neonatal care, and do not adequately predict childhood morbidity. Objectives: To determine which of 18 prespecified, revised definitions of bronchopulmonary dysplasia that variably define disease severity according to the level of respiratory support and supplemental oxygen administered at 36 weeks’ postmenstrual age best predicts death or serious respiratory morbidity through 18–26 months’ corrected age. Methods: We assessed infants born at less than 32 weeks of gestation between 2011 and 2015 at 18 centers of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Measurements and Main Results: Of 2,677 infants, 683 (26%) died or developed serious respiratory morbidity. The diagnostic criteria that best predicted this outcome defined bronchopulmonary dysplasia according to treatment with the following support at 36 weeks’ postmenstrual age, regardless of prior or current oxygen therapy: no bronchopulmonary dysplasia, no support (n = 773); grade 1, nasal cannula ≤2 L/min (n = 1,038); grade 2, nasal cannula >2 L/min or noninvasive positive airway pressure (n = 617); and grade 3, invasive mechanical ventilation (n = 249). These criteria correctly predicted death or serious respiratory morbidity in 81% of study infants. Rates of this outcome increased stepwise from 10% among infants without bronchopulmonary dysplasia to 77% among those with grade 3 disease. A similar gradient (33–79%) was observed for death or neurodevelopmental impairment. Conclusions: The definition of bronchopulmonary dysplasia that best predicted early childhood morbidity categorized disease severity according to the mode of respiratory support administered at 36 weeks’ postmenstrual age, regardless of supplemental oxygen use.

This study is a secondary analysis of an observational prospective case series of 50 infants with severe bronchopulmonary dysplasia that describes patient factors associated with the time between initial hospital discharge and referral to early intervention (EI) services. It also evaluates associations between (1) timing of EI referral and reception of EI services and (2) early referral to EI and developmental outcomes at 18 to 36 months corrected age. The results demonstrated that a referral from a neonatologist versus a pediatrician was associated with fewer days between discharge and EI referral. Earlier EI referrals were associated with a shorter time to intake evaluation and service initiation. The Bayley-III (Bayley Scales of Infant and Toddler Development, 3rd Edition) scores at 24 months corrected age (n = 28) were not associated with timing of EI referral. In conclusion, an early referral to EI promoted earlier evaluation and initiation of EI services and should be standard for high-risk infants.

The objectives describe the frequency that inadequate oral feeding (IOF) is the reason why moderately preterm (MPT) infants remain hospitalized and its association with neonatal morbidities. Prospective study using the NICHD Neonatal Research Network MPT Registry. Multivariable logistic regression was used to describe associations between IOF and continued hospitalization at 36 weeks postmenstrual age (PMA). A total of 6017 MPT infants from 18 centers were included. Three-thousand three-seventy-six (56%) remained hospitalized at 36 weeks PMA, of whom 1262 (37%) remained hospitalized due to IOF. IOF was associated with RDS (OR 2.02, 1.66–2.46), PDA (OR 1.86, 1.37–2.52), sepsis (OR 2.36, 95% 1.48–3.78), NEC (OR 16.14, 7.27–35.90), and BPD (OR 3.65, 2.56–5.21) compared to infants discharged and was associated with medical NEC (OR 2.06, 1.19–3.56) and BPD (OR 0.46, 0.34–0.61) compared to infants remaining hospitalized for an alternative reason. IOF is the most common barrier to discharge in MPT infants, especially among those with neonatal morbidities.

Objective To assess parents' views of their children's health-related quality of life (HRQoL) and the association between neonatal morbidities and HRQoL in children with severe bronchopulmonary dysplasia (BPD) who survived to 18-36 months of corrected age. Study Design Study population included infants born Results Seventy children (67% male, gestational age 26.1 ± 2.0 weeks, and birth weight 797 ± 318g) were enrolled at 27.1 ± 5.8 months of corrected age. Mean PHY-QoL and PS-QoL were 78.0 ± 21.9 and 75.3 ± 17.9, respectively, both significantly lower than reported means for term and preterm cohorts, with the exception of emotional QoL. Adjusted postnatal composite morbidity score was cumulatively associated with poorer PHY-QoL (P = .002) and poorer PS-QoL (P = .015). Presence of each additional neonatal morbidity was associated with a 4.4-point decrease in PHY-QoL and 2.8-point decrease in PS-QoL. Conclusions In this cohort, parental perceived HRQoL for their child with severe BPD was lower than expected for term and preterm populations. Neonatal morbidities had an additive association with poorer parental assessment of PHY-QoL and PS-QoL. These findings may aid in care of children with severe BPD and their families, both in the intensive care nursery and postdischarge.

Background: Short-term outcomes after delayed cord clamping (DCC) vs. umbilical cord milking (UCM) have not been studied outside of clinical trials. Objective: To compare in-hospital outcomes of DCC vs UCM among infants

Preterm infants with bronchopulmonary dysplasia (BPD), and particularly those who develop the most severe forms of chronic lung disease during the neonatal period, are at high risk for poor developmental outcomes throughout childhood. Infants who require mechanical ventilation at 36 weeks post-menstrual age have significantly increased odds for cerebral palsy, developmental delay at 2 years, and poor academic achievement and low intelligence quotient in adolescence. Over the past several decades, many therapies and care strategies, including steroids, continuous positive airway pressure, surfactant, and other medications have been introduced into clinical practice. These approaches have changed the epidemiology of BPD in very preterm infants. However, BPD remains common and strongly associated with poor development throughout childhood. Only caffeine has been proven to reduce BPD and improve childhood developmental outcomes. In future research, it will be essential to better understand the developmental sequelae of BPD beyond school age and to test interventions to improve developmental trajectories in this population. As new management strategies for BPD are developed, it will be essential to rigorously evaluate both short-term and long-term effects before they are introduced into routine neonatal practice.

Perinatal brain disorders are a broad topic that covers a variety of abnormalities, ranging from congenital disorders of the central nervous system that may be detected early in gestation, to diagnoses made postnatally due to brain injury that occurred around the time of delivery or secondary to prematurity. Neuroimaging of perinatal brain disorders with the use of ultrasound and MRI allows for early detection of neurologic abnormalities, which may have a significant impact on patient care. Correct diagnosis is essential to providing accurate recommendations for management and prognosis, for both parents and providers. This chapter outlines the incidence, pathophysiology, and neuroimaging findings in a variety of perinatal brain disorders.

Rationale and Objectives: To compare cerebral pulsed arterial spin labeling (PASL) perfusion among controls, hypoxic ischemic encephalopathy (HIE) neonates with normal conventional MRI(HIE/MRI⊕), and HIE neonates with abnormal conventional MRI(HIE/MRI⊖). To create a predictive machine learning model of neurodevelopmental outcomes using cerebral PASL perfusion. Materials and Methods: A total of 73 full-term neonates were evaluated. The cerebral perfusion values were compared by permutation test to identify brain regions with significant perfusion changes among 18 controls, 40 HIE/MRI⊖ patients, and 15 HIE/MRI⊕ patients. A machine learning model was developed to predict neurodevelopmental outcomes using the averaged perfusion in those identified brain regions. Results: Significantly decreased PASL perfusion in HIE/MRI⊖ group, when compared with controls, were found in the anterior corona radiata, caudate, superior frontal gyrus, precentral gyrus. Both significantly increased and decreased cerebral perfusion changes were detected in HIE/MRI⊕ group, when compared with HIE/MRI⊖ group. There were no significant perfusion differences in the cerebellum, brainstem and deep structures of thalamus, putamen, and globus pallidus among the three groups. The machine learning model demonstrated significant correlation (p < 0.05) in predicting language(r = 0.48) and motor(r = 0.57) outcomes in HIE/MRI⊖ patients, and predicting language(r = 0.76), and motor(r = 0.53) outcomes in an additional group combining HIE/MRI⊖ and HIE/MRI⊕. Conclusion: Perfusion MRI can play an essential role in detecting HIE regardless of findings on conventional MRI and predicting language and motor outcomes in HIE survivors. The perfusion changes may also reveal important insights into the reperfusion response and intrinsic autoregulatory mechanisms. Our results suggest that perfusion imaging may be a useful adjunct to conventional MRI in the evaluation of HIE in clinical practice.

* Abbreviations: BPD — : bronchopulmonary dysplasia RHO — : recorded home oximetry Bringing a healthy newborn home for the first time can be overwhelming. Bringing a medically fragile, technology-dependent preterm infant with bronchopulmonary dysplasia (BPD) home can be life altering. Peri-discharge communication between multiple inpatient and outpatient providers is often fragmented, leaving families vulnerable and stressed.1,2 The equipment commonly used for home monitoring of infants on supplemental oxygen does not communicate with the providers responsible for decisions about titration of the support after discharge. Parents are therefore expected to intermittently report (by recall or by manual diary) the infant’s respiratory status and oxygen saturation trends to the clinicians. Clinicians must make decisions on the basis of the parental history and brief direct observations. Novel approaches to providing high-quality data to the clinicians responsible for postdischarge management of technology-dependent infants with BPD are urgently needed. The recorded home oximetry (RHO) trial reported by Rhein et al3 in this month’s issue of Pediatrics is the first rigorous study to record pulse oximetry in the home environment and use these data to guide the care of preterm infants on supplemental oxygen … Address correspondence to Sara B. DeMauro, MD, MSCE, Perelman School of Medicine, University of Pennsylvania and Robert’s Center for Pediatric Research, Children’s Hospital of Philadelphia, 2716 South St, Philadelphia, PA 19146. E-mail: demauro{at}email.chop.edu