Prediction of post-hemorrhagic ventricular dilatation trajectory using a growth mixture model in preterm infants.

BACKGROUND: Early intervention for post-hemorrhagic ventricular dilatation (PHVD), guided by ventricular size measurements from cranial ultrasound (cUS), is associated with improved neurodevelopmental outcomes in preterm infants but benefits must be balanced against intervention risks. METHODS: Anterior horn width (AHW) and ventricular index (VI) were measured from cUS for preterm infants (<29 weeks) with intraventricular hemorrhage admitted from 2010-2018. PHVD was defined as AHW > 6 mm or VI >97th percentile for postmenstrual age. Individual ventricular size trajectories were plotted, and a growth mixture model (GMM) used to identify latent trajectory classes and compare these to predetermined outcome of neurosurgical intervention. RESULTS: Measurements were obtained from 1543 cUS in 249 infants, of whom 39 had PHVD without and 17 PHVD with neurosurgical intervention based on signs of raised intracranial pressure. The GMM predicted trajectory identified: 93.3% of infants without PHVD, 88.2% and 30.8% of infants with PHVD with and without intervention using AHW; 100% of infants without PHVD, 52.9% and 59.0% of infants with PHVD with and without intervention using VI. CONCLUSIONS: The AHW GMM identified a significant proportion of infants with severe PHVD. Model refinement offers a promising approach for identifying differences in PHVD trajectory at an early stage to guide management. IMPACT: It is difficult to distinguish the trajectory of PHVD in the early stage of development, in particular PHVD that spontaneously arrests from slowly progressive PHVD which eventually requires intervention. We report the first modeling-based evaluation of PHVD trajectory for the prediction of short-term outcome of PHVD progression and neurosurgical intervention. With additional clinical validation and optimization to increase accuracy, predictive modeling has the potential to identify important differences in PHVD trajectory at an early stage in the clinical course, allowing for more individualized data-driven risk-benefit assessments to guide decisions on early intervention.

Postnatal acetaminophen exposure and neurodevelopmental outcomes at 18-21 months corrected gestational age in preterm infants <29 weeks gestation: a retrospective cohort study.

BACKGROUND: Studies have reported prenatal acetaminophen exposure is associated with abnormal neurodevelopment. There is limited and conflicting data on neurodevelopmental outcomes following postnatal acetaminophen exposure. Our objective was to investigate the neurodevelopmental outcomes of preterm infants < 29 weeks gestation postnatally exposed to acetaminophen. METHODS: Retrospective cohort study of infants born between 2008 and 2017 at a tertiary care perinatal center. Exclusion criteria included chromosomal disorders, major congenital abnormalities, and congenital infections. The primary outcome was a composite score of <85 on the cognitive, language, or motor components of the Bayley Scales of Infant and Toddler Development, 3rd edition, assessed at 18 to 21 months corrected gestational age. Multivariate logistic regression was used to assess confounders. RESULTS: Of the 945 infants included in the study, 120 were in the acetaminophen group. There was no difference in any of Bayley-III cognitive, language or motor composite scores of < 85 between the two groups for postnatal acetaminophen exposure, adjusted odds ratios (aORs) 1.03, 95% CI 0.60-1.78, or days of acetaminophen use, aORs 1.10, 95% CI 0.93-1.29. CONCLUSIONS: There was no difference in neurodevelopmental outcome between the acetaminophen exposed and non-exposed groups. Our results need validation in larger cohorts. IMPACT: Animal research and cohort studies have suggested that prenatal acetaminophen exposure may be associated with an elevated risk of neurobehavioral abnormalities. However, there is limited and conflicting research on the impact of postnatal acetaminophen on neurodevelopment. The results of this study suggest that postnatal acetaminophen does not negatively impact neurodevelopment at 18 to 21 months in preterm infants born at <29 weeks gestational age. While these results need validation in larger and more longitudinal studies, this study provides reassurance for the use of postnatal acetaminophen in extremely preterm infants.

Infants less than or equal to 2.5 kg have increased mortality and worse motor neurodevelopmental outcomes at 2 years of age after Norwood-Sano palliation.

Objectives: In infants with single-ventricle congenital heart disease, prematurity and low weight at the time of the Norwood operation are risk factors for mortality. Reports assessing outcomes (including neurodevelopment) post Norwood palliation in infants ≤2.5 kg are limited. Methods: All infants who underwent a Norwood-Sano procedure between 2004 and 2019 were identified. Infants ≤2.5 kg at the time of the operation (cases) were matched 3:1 with infants >3.0 kg (comparisons) for year of surgery and cardiac diagnosis. Demographic and perioperative characteristics, survival, and functional and neurodevelopmental outcomes were compared. Results: Twenty-seven cases (mean ± standard deviation: weight 2.2 ± 0.3 kg and age 15.6 ± 14.1 days at surgery) and 81 comparisons (3.5 ± 0.4 kg and age 10.9 ± 7.9 days at surgery) were identified. Post-Norwood, cases had a longer time to lactate ≤2 mmol/L (33.1 ± 27.5 vs 17.9 ± 12.2 hours, P < .001), longer duration of ventilation (30.5 ± 24.5 vs 18.6 ± 17.5 days, P = .005), greater need for dialysis (48.1% vs 19.8%, P = .007), and greater need for extracorporeal membrane oxygenation support (29.6% vs 12.3%, P = .004). Cases had significantly greater postoperative (in-hospital) (25.9% vs 1.2%, P < .001) and 2-year (59.2% vs 11.1%, P < .001) mortality. Neurodevelopmental assessment showed the following for cases versus comparisons, respectively: cognitive delay (18.2% vs 7.9%, P = .272), language delay (18.2% vs 11.1%, P = .505), and motor delay (27.3% vs 14.3%, P = .013). Conclusions: Infants ≤2.5 kg at Norwood-Sano palliation have significantly increased postoperative morbidity and mortality up to 2-year follow-up. Neurodevelopmental motor outcomes were worse in these infants. Additional studies are warranted to assess the outcome of alternative medical and interventional treatment plans in this patient population.

Parent-Integrated Interventions to Improve Language Development in Children Born Very Preterm.

Neurodevelopmental challenges in children born very preterm are common and not improving. This study tested the feasibility of using Evidence-based Practice to Improve Quality (EPIQ), a proven quality improvement technique that incorporates scientific evidence to target improving language abilities in very preterm populations in 10 Canadian neonatal follow-up programs. Feasibility was defined as at least 70% of sites completing four intervention cycles and 75% of cycles meeting targeted aims. Systematic reviews were reviewed and performed, an online quality improvement educational tool was developed, multidisciplinary teams that included parents were created and trained, and sites provided virtual support to implement and audit locally at least four intervention cycles of approximately 6 months in duration. Eight of ten sites implemented at least four intervention cycles. Of the 48 cycles completed, audits showed 41 (85%) met their aim. Though COVID-19 was a barrier, parent involvement, champions, and institutional support facilitated success. EPIQ is a feasible quality improvement methodology to implement family-integrated evidence-informed interventions to support language interventions in neonatal follow-up programs. Further studies are required to identify potential benefits of service outcomes, patients, and families and to evaluate sustainability.

Alberta Collaborative Quality Improvement Strategies to Improve Outcomes of Moderate and Late Preterm Infants (ABC-QI) Trial: a protocol for a multicentre, stepped-wedge cluster randomized trial.

BACKGROUND: Evidence-based Practice for Improving Quality (EPIQ) is a collaborative quality improvement method adopted by the Canadian Neonatal Network that led to decreased mortality and morbidity in very preterm neonates. The Alberta Collaborative Quality Improvement Strategies to Improve Outcomes of Moderate and Late Preterm Infants (ABC-QI) Trial aims to evaluate the impact of EPIQ collaborative quality improvement strategies in moderate and late preterm neonates in Alberta, Canada. METHODS: In a 4-year, multicentre, stepped-wedge cluster randomized trial involving 12 neonatal intensive care units (NICUs), we will collect baseline data with the current practices in the first year (all NICUs in the control arm). Four NICUs will transition to the intervention arm at the end of each year, with 1 year of follow-up after the last group transitions to the intervention arm. Neonates born at 32 + 0 to 36 + 6 weeks' gestation with primary admission to NICUs or postpartum units will be included. The intervention includes implementation of respiratory and nutritional care bundles using EPIQ strategies, including quality improvement team building, quality improvement education, bundle implementation, quality improvement mentoring and collaborative networking. The primary outcome is length of hospital stay; secondary outcomes include health care costs and short-term clinical outcomes. Neonatal intensive care unit staff will complete a survey in the first year to assess quality improvement culture in each unit, and a sample will be interviewed 1 year after implementation in each unit to evaluate the implementation process. INTERPRETATION: The ABC-QI Trial will assess whether collaborative quality improvement strategies affect length of stay in moderate and late preterm neonates. It will provide detailed population-based data to support future research, benchmarking and quality improvement. TRIAL REGISTRATION: ClinicalTrials.gov, no. NCT05231200.

Le suivi de l'extrême prématuré après le congé des soins intensifs néonatals.

La survie des extrêmes prématurés (moins de 28 semaines d'âge gestationnel) s'est améliorée au fil du temps. Bon nombre s'en sortent bien et ont une bonne qualité de vie. Ils demeurent toutefois vulnérables à des problèmes de santé, y compris des difficultés neurosensorielles et neurodéveloppementales, que les médecins de première ligne, les pédiatres et les cliniques spécialisées doivent surveiller. Le présent document de principes passe en revue les conséquences médicales et neurodéveloppementales potentielles pour les extrêmes prématurés dans les deux ans suivant leur congé et fournit des stratégies de counseling, de dépistage précoce et d'intervention. Parce qu'ils sont tous liés à l'extrême prématurité, la dysplasie bronchopulmonaire ou les troubles respiratoires, les problèmes d'alimentation et de croissance, le développement neurosensoriel (vision et audition), la paralysie cérébrale et le trouble du spectre de l'autisme doivent faire rapidement l'objet d'une évaluation. Pour évaluer la croissance et le développement, il faut corriger l'âge chronologique en fonction de l'âge gestationnel jusqu'à 36 mois de vie. Par ailleurs, l'attention au bien-être émotionnel des parents et des proches fait partie intégrante des soins de qualité de l'extrême prématuré.

Follow-up care of the extremely preterm infant after discharge from the neonatal intensive care unit.

The survival of babies born extremely preterm (EP, <28 weeks gestation) has improved over time, and many have good outcomes and quality of life. They remain at risk for health issues, including neurosensory and neurodevelopmental difficulties requiring monitoring by primary physicians, paediatricians, and specialty clinics. This statement reviews potential medical and neurodevelopmental consequences for EP infants in the first 2 years after discharge and provides strategies for counselling, early detection, and intervention. EP-related conditions to assess for early include bronchopulmonary dysplasia or respiratory morbidity, feeding and growth concerns, neurosensory development (vision and hearing), cerebral palsy, and autism spectrum disorder. Correction for gestational age should be used for growth and development until 36 months of age. Integral to quality care of the child born EP is attention to the emotional well-being of parents and caregivers.

Impact of Differing Language Background Exposures on Bayley-III Language Assessment in a National Cohort of Children Born Less than 29 Weeks' Gestation.

Preterm infants are at risk for adverse neurodevelopmental outcomes, especially language delay. Preterm infants < 29 weeks' gestational age, cared for in Canadian Neonatal Follow-Up Network affiliated hospitals, were assessed between 18 to 21 months corrected age using the Bayley-III. Bayley-III Language Composite Scores were compared using univariate and multivariate analyses for children in three primary language groups: English, French and other. 6146 children were included. The primary language at home was English, French or another language for 3708 children (60%), 1312 children (21%) and 1126 children (18%), respectively, and overall, 44% were exposed to two or more languages at home. Univariate analysis showed that primary language was associated with lower Bayley-III Language scores; however, multivariate analyses demonstrated that neither primary language nor language of administration were significantly associated with lower language scores when adjusted for gestational age, other developmental delays and sociodemographic factors, but multiple language exposure was. Sociodemographic and other factors are more important in determining language development than primary language at home. Further studies are needed to examine the association between exposure to multiple languages and lower Bayley-III language scores in preterm infants.

Maternal High-Dose DHA Supplementation and Neurodevelopment at 18-22 Months of Preterm Children.

OBJECTIVES: To determine whether maternal supplementation with high-dose docosahexaenoic acid (DHA) in breastfed, very preterm neonates improves neurodevelopmental outcomes at 18 to 22 months' corrected age (CA). METHODS: Planned follow-up of a randomized, double-blind, placebo-controlled, multicenter trial to compare neurodevelopmental outcomes in breastfed, preterm neonates born before 29 weeks' gestational age (GA). Lactating mothers were randomized to receive either DHA-rich algae oil or a placebo within 72 hours of delivery until 36 weeks' postmenstrual age. Neurodevelopmental outcomes were assessed with the Bayley Scales of Infant and Toddler Development third edition (Bayley-III) at 18 to 22 months' CA. Planned subgroup analyses were conducted for GA (<27 vs ≥27 weeks' gestation) and sex. RESULTS: Among the 528 children enrolled, 457 (86.6%) had outcomes available at 18 to 22 months' CA (DHA, N = 234, placebo, N = 223). The mean differences in Bayley-III between children in the DHA and placebo groups were -0.07 (95% confidence interval [CI] -3.23 to 3.10, P = .97) for cognitive score, 2.36 (95% CI -1.14 to 5.87, P = .19) for language score, and 1.10 (95% CI -2.01 to 4.20, P = .49) for motor score. The association between treatment and the Bayley-III language score was modified by GA at birth (interaction P = .07). Neonates born <27 weeks' gestation exposed to DHA performed better on the Bayley-III language score, compared with the placebo group (mean difference 5.06, 95% CI 0.08-10.03, P = .05). There was no interaction between treatment group and sex. CONCLUSIONS: Maternal DHA supplementation did not improve neurodevelopmental outcomes at 18 to 22 months' CA in breastfed, preterm neonates, but subgroup analyses suggested a potential benefit for language in preterm neonates born before 27 weeks' GA.

Does a Split-Week Gestational Age Model Provide Valuable Information on Neurodevelopmental Outcomes in Extremely Preterm Infants?

Our primary objective for this follow-up study was to compare the neurodevelopmental outcomes of a surviving cohort of infants using a split-week gestational model (early versus late) gestational age (GA) and the standard completed GA categorization. Neurodevelopmental outcomes using a split-week GA model defined as early (X, 0-3) and late (X, 4-6), with X being 23-26 weeks GA, were compared to outcomes using completed weeks GA. In total, 1012 infants were included in the study. Statistically significant differences were noted in outcomes between the early and late split of the gestational week at 23 weeks (early vs. late), with 13.3% vs. 54.5% for no neurodevelopmental impairment, and 53.3% vs. 22.7% for significant impairment (p = 0.034), respectively. There were no differences seen in the split week model for 24, 25, and 26 weeks. A trend towards improved neurodevelopmental outcomes was seen with each increasing gestation week. The split-week model did not provide additional information for pregnancies and infants between 24 and 26 weeks gestation. It did, however, provide information for counsel for infants at 23 weeks gestation, showing benefits in the late versus early half of the week.

Selective serotonin reuptake inhibitors or serotonin-norepinephrine reuptake inhibitors in pregnancy: Infant and childhood outcomes.

This position statement provides guidance for the monitoring, care, and follow-up of newborns exposed to selective serotonin reuptake inhibitors (SSRIs) or serotonin-norepinephrine reuptake inhibitors (SNRIs) in utero. Depression and anxiety are common during pregnancy and postpartum. While there are risks to taking medications during pregnancy, untreated or incompletely managed depression and anxiety also carry risks for the newborn. Poor neonatal adaptation syndrome (PNAS) occurs in one-third of newborns exposed to SSRIs or SNRIs in utero, and is generally mild and self-limiting. The low levels of SSRIs and SNRIs excreted in breast milk are compatible with breastfeeding. Persistent pulmonary hypertension of the newborn and congenital heart defects are rare associations of exposure to SSRIs or SNRIs in utero. There are inconsistencies in the literature regarding neurodevelopmental outcomes, specifically autism spectrum disorder and attention-deficit hyperactivity disorder. The inconsistencies likely relate to other factors (i.e., genetics, maternal depression, lifestyle, and comorbidities), rather than exposure to SSRIs or SNRIs in utero. Health care providers and parents should be reassured that PNAS is generally treatable with nonpharmacological measures, and that the risk of serious adverse effects from exposure to SSRIs or SNRIs in utero is low.

Split-week gestational age model provides valuable information on outcomes in extremely preterm infants.

AIM: To compare composite outcomes of neonatal mortality or morbidity using a split-week gestational age (GA) model to completed weeks GA maturity at 23-26 weeks gestation. METHODS: This was a retrospective cohort study of infants born at 23-26 weeks GA. Outcomes using a split-week GA model defined as early (X, 0-3) and late (X, 4-6) with X being 23-26 weeks GA were compared to outcomes using completed weeks GA, with a similar comparison between the late split of the preceding week (X, 4-6) and early split of the subsequent week (X + 1, 0-3). RESULTS: A total of 1345 infants were included in the study. Statistically significant differences were noted in outcomes between the early and late split of the gestational week at 24 (early vs late, 85.6% vs 73.0%), 25 (69.6% vs 56.6%) and 26 weeks (55.9% vs 37.4%), but not at 23 weeks GA (95.2% vs 94.5%). No statistically significant differences were noted between the late vs early part of the subsequent week (23, 4-6) vs (24, 0-3), and (24, 4-6) vs (25, 0-3) GA. CONCLUSION: Neonatal outcome estimates using a split week model differs from that based on the use of completed weeks of gestational maturity.

Avoiding Furosemide Ototoxicity Associated With Single-Ventricle Repair in Young Infants.

OBJECTIVE: To reduce bilateral delayed-onset progressive sensory permanent hearing loss using a systems-wide quality improvement project with adherence to best practice for the administration of furosemide. DESIGN: Prospective cohort study with regular audiologic follow-up assessment of survivors both before and after a 2007-2008 quality improvement practice change. SETTING: The referral center in Western Canada for complex cardiac surgery, with comprehensive multidisciplinary follow-up by the Complex Pediatric Therapies Follow-up Program. PATIENTS: All consecutive patients having single-ventricle palliative cardiac surgery at age 6 weeks old or younger. INTERVENTIONS: A 2007-2008 quality improvement practice change consisted of a Parenteral Drug Monograph revision indicating slow IV administration of furosemide, an educational program, and an evaluation. MEASUREMENTS AND MAIN RESULTS: The outcome measure was the prevalence of permanent hearing loss by 4 years old. Firth multiple logistic regression compared pre (1996-2008) to post (2008-2012) practice change occurrence of permanent hearing loss, adjusting for confounding variables, including all hospital days, extracorporeal membrane oxygenation, cardiopulmonary bypass time, age at first surgery, dialysis, and sepsis. From 1996 to 2012, 259 infants had single-ventricle palliative surgery at age 6 weeks old or younger, with 173 (64%) surviving to age 4 years. Of survivors, 106 (61%) were male, age at surgery was 11.6 days (9.0 d), and total hospitalization days by age 4 years were 64 (42); 18 (10%) had cardiopulmonary resuscitation and 38 (22%) had sepsis at any time. All 173 (100%) had 4-year follow-up. Pre- to postpractice change permanent hearing loss dropped from 17/100 (17%) to 0/73 (0%) of survivors. On Firth multiple logistic regression, the only variable statistically associated with permanent hearing loss was the pre- to postpractice change time period (odds ratio, 0.03; 95% CI, 0-0.35; p = 0.001). CONCLUSIONS: A practice change to ensure slow IV administration of furosemide eliminated permanent hearing loss. Centers caring for critically ill infants, particularly those with single-ventricle anatomy or hypoxia, should review their drug administration guidelines and adhere to best practice for administration of IV furosemide.

Early Childhood Neurodevelopmental Outcomes in Infants Exposed to Infectious Syphilis In Utero.

BACKGROUND: There are minimal neurodevelopmental follow-up data for infants exposed to syphilis in utero. METHODS: This is an inception cohort study of infants exposed to syphilis in utero. We reviewed women with reactive syphilis serology in pregnancy or at delivery in Edmonton (Canada), 2002 through 2010 and describe the neurodevelopmental outcomes of children with and without congenital syphilis. RESULTS: There were 39 births to women with reactive syphilis serology, 9 of whom had late latent syphilis (n = 4), stillbirths (n = 2) or early neonatal deaths (n = 3), leaving 30 survivors of which 11 with and 7 without congenital syphilis had neurodevelopmental assessment. Those with congenital syphilis were all born to women with inadequate syphilis treatment before delivery. Neurodevelopmental impairment was documented in 3 of 11 (27%) infants with congenital syphilis and one of 7 (14%) without congenital syphilis with speech language delays in 4 of 11 (36%) with congenital syphilis and 3 of 7 (42%) without congenital syphilis. CONCLUSIONS: Infants born to mothers with reactive syphilis serology during pregnancy are at high risk for neurodevelopmental impairment, whether or not they have congenital syphilis, so should all be offered neurodevelopmental assessments and early referral for services as required.

Establishing Bayley-III cut-off scores at 21 months for predicting low IQ scores at 3 years of age in a preterm cohort.

OBJECTIVE: To evaluate predictive validity and establish cut-off scores on the Bayley-III at age 21 months that best predict Intelligence Quotient (IQ) scores <70 or <80) at 3 years in a high-risk preterm cohort. METHOD: Bayley-III evaluations at 21 months corrected age and intellectual assessments, primarily with the WPPSI-III, at 3 years corrected age were conducted with 520 infants born less than 29 weeks gestational age or less than 1250 g birth weight. Receiver Operator Characteristic (ROC) curves were used to establish Bayley-III Cognitive Composite cut-off scores that maximized Sensitivity and Specificity in predicting low IQ. Similar analyses were performed using the Language Composite, and a research derived mean Cognitive-Language Composite. RESULTS: A regression model for the association between 21-month Bayley-III Cognitive Composite and 3-year IQ scores was significant (P<0.0001, Adjusted R2=0.36). The ROC area under the Curve was 0.90 for the Cognitive Composite predicting IQ<70. The cut-off score that maximized Sensitivity and Specificity for predicting 3-year IQ<70 was a Cognitive Composite of <80. The ROC Area under the Curve was 0.80 for Cognitive Composites predicting IQ<80 and a Cognitive Composite cut-off score of <90 maximized Sensitivity and Specificity. CONCLUSION: In this high-risk preterm cohort, there was a strong association between the Bayley-III Cognitive Composite at 21 months and IQ at 3 years. A Cognitive Composite cut-off score of <80 optimized classification of IQ<70 at 3 years, and a Cognitive Composite cut-off score of <90 optimized classification of IQ<80.

Supporting and communicating with families experiencing a perinatal loss.

Perinatal loss is one of the most devastating events a family can experience. This practice point focuses on circumstances that are likely to involve paediatric health care professionals. Recommendations are provided for compassionate communication, bereavement, sibling care and counselling to support families.

Health care providers' perspectives of providing culturally competent care in the NICU.

OBJECTIVE: To examine the experiences and perceptions of health care providers caring for new immigrant families in the neonatal intensive care unit (NICU). DESIGN: Qualitative design using grounded theory methodology. SETTING: Two tertiary-level NICUs of two large metropolitan hospitals in western Canada. PARTICIPANTS: Fifty eight (58) health care providers from multiple disciplines. METHODS: Health care providers were interviewed during seven focus groups. We recorded and transcribed focus group data. We analyzed transcripts via line-by-line coding, categorization of codes, concept saturation, and theme generation assisted through NVIVO software. RESULTS: Health care providers identified the nuanced construct of fragile interactions that is embedded within care of the new immigrant family in the NICU. During crisis, decision making, differing norms and beliefs, and language and communication are barriers that affected the fragile nature of interactions. During transition home, fragile interactions were affected by unintentional stereotyping, limited time for intangible activities, and lack of intuitive perceptions of the needs of new immigrant families. Health care providers employed caring and culturally competent strategies to overcome the fragile nature of interactions. CONCLUSION: Within the premise of providing family-centered care is the concept of honoring cultural, ethnic, and socioeconomic diversity; it is imperative that culturally competent care be considered and implemented as a separate stand-alone aspect when caring for new immigrant families.

Connection versus disconnection: examining culturally competent care in the neonatal intensive care unit.

Culturally competent health care is of critical importance; however, it is presented as a frequent challenge in health care settings. This study explored cross-cultural care from the health care provider perspective within two tertiary level Neonatal Intensive Care Units (NICUs). Fifty eight inter-professional health care providers (HCP) participated in focus groups. Participants identified perceived care-related experiences of newly immigrated parents whose infant received care in the NICU as well as health care provider perspectives on delivering that care. Results identified core processes of "connection" and "disconnection," which appeared to have a substantial bearing on NICU experience and interaction. Connection comprised congruity, synergy, and "fit," and resulted in an enhanced relationship between the family and HCP. Disconnection, in contrast, entailed a lack of "fit" and in some cases, misunderstanding and/or conflict between the family and a member or members of the health care team. Connection and disconnection occurred at various junctures of NICU care. These junctures reflected interaction between the family and HCP at the bedside and/or at the level of the unit, hospital, or community at large. Implications for practice, policy, and research are discussed.

Early childhood outcomes of infants born with gastroschisis.

PURPOSE: To describe neonatal and childhood outcomes of a contemporary cohort of infants with gastroschisis. METHODS: Observational, single center, inception cohort of children born with gastroschisis from January 2005 to December 2008. RESULTS: Of 63 infants, 61 survived to hospital discharge and 39 were seen for follow-up. Complications included sepsis (37%), necrotizing enterocolitis (10%), parenteral nutrition related cholestasis (25%), and short bowel syndrome (13%). Of survivors, 5% had visual impairment and 10% had hearing loss. No child tested had mental delay or cerebral palsy. Early gestational age predicted death or disability (OR 0.60, 95% CI 0.38, 0.96; p=0.033). There was a high incidence of prescription medications for presumed gastroesophageal reflux (90%). Some infants continued to require tube feeds (15%). There were improvements in longitudinal growth reflected in increasing z-scores. CONCLUSIONS: Although children with gastroschisis are at risk for disability, childhood outcomes are encouraging.

More than information: a qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity.

PURPOSE: To describe parental perceptions of decision making concerning their extremely premature newborns who received care in a level III neonatal intensive care unit (NICU). SUBJECTS: Seven parents of preterm infants who were born at 24 to 26 weeks' gestation at a western Canadian tertiary NICU. DESIGN: Qualitative, interpretive description, semistructured interviews. METHODS: The first author conducted interviews with both parents together or the mother alone. Interviews were recorded, transcribed, and analyzed. RESULTS: Three main themes related to decision making, culture shock, and relationships emerged: (1) decision making before and in the NICU: moving beyond information, (2) culture shock in the NICU: plunging into a strange land, and (3) relationships in the NICU: enduring in a strange land. CONCLUSIONS: Although information and decision making are interconnected and fundamental to parents' experiences of their preterm baby's NICU stay, they also identified the culture and language of the NICU and genuine relationships formed with healthcare professionals as significantly influencing their experiences.