Fragile Infants Research Articles

Donor Milk Expression Habits: Can we Favor Hindmilk Banking for Extremely Preterm Infants?

Background: Extremely preterm infants often receive donor milk. Hindmilk, which is released more than 3 minutes after letdown, could be advantageous due to its elevated levels of fat and calorie density. Donor milk expression habits may influence milk composition but have not yet been investigated. This study aims to assess the practices of milk donors and the feasibility of hindmilk expression. Methods: Active milk donors in Québec were questioned using an online survey about their milk expression habits and whether hindmilk donation would be acceptable to them. Answers were analyzed using mixed methods. Results: Of 181 donors, 126 fully completed the questionnaire (70%); 57% reported expressing donated milk between breastfeeds; 15% reported simultaneously breastfeeding while expressing donated milk from the other breast; 12% reported breastfeeding their baby on each breast, then expressing donated milk (hindmilk). The majority (66%) would be willing to change their habits most or all the time to provide hindmilk for preterm infants. The main themes invoked by respondents in open-ended answers were altruism and gratitude for being able to help others. However, 15% commented on the complexity of milk expression or that adding further complexity might discourage them from donating. Conclusions: Expression practices are variable, which may lead to variability in donor milk composition. Most donors would agree to change their expression habits in favor of giving hindmilk to help the most fragile infants. More information is needed on how changing recommendations for milk expression might impact the supply and composition of donor milk.

“I feel like it's just really become second nature, almost like the screen’s not there”: a qualitative case study of the transition to telehealth for home visitation program to support fragile infants due to the COVID-19 pandemic

A subset of early childhood home visitation programs support fragile infants and prevent hospital readmission as infants transition out of the neonatal intensive care unit (NICU) into their home. However, the COVID-19 pandemic initiated an unexpected change in the delivery of home visitation care to adhere to social distancing guidelines, resulting in a rapid transition into telehealth services. In this study, individual semi-structured interviews were conducted with staff from a NICU-transition home visitation program in Arizona. The Modified Technology Acceptance Model (MTAM) was used to evaluate the experiences of in-person to telehealth home visitations during the COVID-19 pandemic. Rapid Qualitative Analysis Method was utilized to generate a thematic analysis. Three major themes were identified: staff-centric, family-centric, and the experience of collective adjustment to the stressors of the pandemic. Participants faced challenges transitioning to telehealth visits, including not being able to physically demonstrate development skills on the infant. However, the telehealth model allowed staff to serve a larger geographic area, as well as allowing them to build a larger caseload as they had more control over their schedule. Staff also noted that families appreciated telehealth home visits as an added layer of health protection for their fragile infants. Because the transition to telehealth was abruptly necessitated by the COVID-19 pandemic, the study participants did not have the option to not use telehealth; thus, in the future, the MTAM framework could benefit from adaptions that address the rapid adoption of technology due to large disruptors such as COVID-19.

Simulation Training to Increase Holding of Fragile Infants in Cardiac Intensive Care Units.

Promoting bonding and neurodevelopmental care is an important element in the cardiovascular intensive care unit (CICU); however, holding of infants by family members is inconsistently practiced. This quality improvement study aimed to safely increase the holding of medically complex infants in the CICU by developing a holding guideline and offering simulation-based staff education. Using consensus methodology and high-fidelity simulation, an expert work group created a holding guideline and training to increase staff confidence and competence in holding critically ill infants in the CICU. The effectiveness of the intervention was tested via a postintervention survey used to assess participants' confidence in and comfort with holding critically ill infants and elicit suggestions for further support. Participants who engaged with the mannequin were surveyed to assess the validity of the simulation trainer. After the intervention, participants (N = 130) reported increased confidence with infant holding (76%) and greater confidence in preparing families to hold their infants. Participants (95%) strongly agreed that the simulation enabled realistic, safe practice in holding a medically complex infant with catheters and tubes. More years of experience and engagement with the simulation trainer were associated with increased posttraining confidence. Participants cited increased resources, practice, and adherence monitoring as key supports for infant holding. Expert group consensus with high-fidelity simulation training is a feasible, safe, and reliable method for teaching higher risk skills and guiding protocol development.

Mental Health Support and Screening for Mood Disorders for Caregivers in the Neonatal Intensive Care Unit: Is the Call to Arms being Answered?

Perinatal mood and anxiety disorders (PMADs) affect many NICU parents and are a significant risk factor for maternal suicide. Lack of screening and treatment interferes with infant development and bonding, compounding risks in fragile infants. We aim to describe PMAD screening in level IV NICUs across the Children's Hospitals Neonatal Consortium (CHNC) and to determine the relationship between standardized screening and mental health professionals (MHPs) presence. We surveyed experts at 44 CHNC NICUs about PMADs screening practices and presence of NICU-specific MHPs. Kruskal Wallis test was used to examine relationships. Of 44 centers, 34 (77%) responded. 14 centers (41%) perform screening with validated tools. 13 (38%) centers have NICU-dedicated psychologists. Formally-screening centers tend to have higher cumulative MHPs (p=0.089) than informally screening centers. Repeat screening practices were highly variable with no difference in the number of cumulative MHPs. Screening practices for PMADs vary across CHNC centers; less than half have additional MHPs beyond social workers. Creating a sustainable model to detect PMADs likely requires more MHPs in NICUs.

Ventilator strategies in congenital diaphragmatic hernia

This review focuses on contemporary mechanical ventilator practices used in the initial management of neonates born with congenital diaphragmatic hernia (CDH). Both conventional and non-conventional ventilation modes in CDH are reviewed. Special emphasis is placed on the rationale for gentle ventilation and the current evidence-based clinical practice guidelines that are recommended for supporting these fragile infants. The interplay between CDH lung hypoplasia and other key cardiopulmonary elements of the disease, namely a reduced pulmonary vascular bed, abnormal pulmonary vascular remodeling, and left ventricular hypoplasia, are discussed. Finally, we provide insights into future avenues for mechanical ventilator research in CDH.

Nosocomial Infections in the Neonatal Intensive Care Unit.

Nosocomial infections are relatively common in the NICU. These infections increase morbidity and mortality, particularly in the smallest and most fragile infants. The impact of these infections on long-term outcomes and health-care costs is devastating. Worldwide efforts to decrease the incidence of nosocomial infections have focused on implementing specific prevention protocols such as handwashing, central line teams, care bundles, and antimicrobial stewardship. This review summarizes common nosocomial infections in patients in the NICU.

Metabolic maturation in the infant urine during the first 3 months of life

The infant urine metabolome provides a body metabolic snapshot, and the sample collection can be done without stressing the fragile infant. 424 infant urine samples from 157 infants were sampled longitudinally at 1-, 2-, and 3 months of age. 49 metabolites were detected using proton nuclear magnetic resonance spectroscopy. Data were analyzed with multi- and univariate statistical methods to detect differences related to infant age-stage, gestational age, mother’s pre-pregnancy BMI, C-section, infant birth weight, and infant sex. Significant differences were identified between age-stage (pbonferoni < 0.05) in 30% (15/49) of the detected metabolites. Urine creatinine increased significantly from 1 to 3 months. In addition, myo-inositol, taurine, methionine, and glucose seem to have conserved levels within the individual over time. We calculated a urine metabolic maturation age and found that the metabolic age at 3 months is negatively correlated to weight at 1 year. These results demonstrate that the metabolic maturation can be observed in urine metabolome with implications on infant growth and specifically suggesting that the systematic age effect on creatinine promotes caution in using this as normalization of other urine metabolites.

Parents’ Journeys of Mastery and Knowledge Construction After Their Infant’s First Stage of Surgery for Complex Congenital Heart Disease

ABSTRACT Background A growing body of conceptual evidence over the last decade has increased our understanding of parents’ experiences of having an infant with complex congenital heart disease. These concepts include parents’ feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents’ experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children’s cardiac nurses responsible for parental education, discharge planning and coordination. Aim To explore parents’ experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery. Design A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks’ post discharge (T1), 8 weeks’ post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores. Results Sixteen parents of 12 infants participated. Four “patterns of transition experience” emerged, the fourth “Mastery”, is discussed in this paper. Mastery can be contextualized in terms of the parents’ journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents’ ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p = .011), T2 (p = .018) and T3 (p = .012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant. Conclusion Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework “Parenting through Transitions – hospital to home” emerged that could assist in structuring assessment of parents’ knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant’s first stage of complex cardiac surgery.

Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

55 Milk Expression Habits in Maternal Milk Donors: Should We Favor Hindmilk Banking for Extremely Preterm Infants?

Abstract Background A maternal milk bank was established in 2014 in Québec. The caloric contents of pooled milk lots ranges from 58-73 calories/100 ml, whereas most babies need ≥82 calories/100 ml. Hindmilk is 2-3 times fatter than foremilk, contains more protein and would be ideal for the most fragile extremely preterm infants. This would avoid adding cow-milk protein fortifier in the first weeks of life. Hindmilk is only released 2-3 minutes post-letdown, so that the milk expression habits of donating mothers may influence caloric content. These habits are ill-documented, and precise recommendations on milk expression habits are needed. Objectives The objective of this study was to examine the feasibility of hindmilk expression by breastmilk donors so as to provide it for the most fragile preterm infants. Design/Methods In 2021, an electronic questionnaire was emailed to all active milk donors in Québec to collect data on their milk expression habits and their willingness to change them. The questionnaire contained both closed and open-ended questions. Response were analyzed using mixed methods. Results In total, 126 out of 181 donors (70%) completed the questionnaire. Most participants (78%) had a university degree, and 65.0% had &amp;gt;1 pregnancy. Overall, 98% were comfortable or very comfortable with current recommendations on milk expression, and 91% were aware or well aware of the benefits of maternal milk for preterm babies. Concerning breastfeeding habits, 68% reported expressing milk for banking between breastfeedings; 18% reported expressing milk for banking from one breast while keeping the milk from their other breast for their baby; and 14% reported breastfeeding their baby on each breast and keeping hindmilk for banking. Overall, 66% of participants said they would be willing to change their habits most or all the time to provide hindmilk for the most fragile babies. The main theme invoked in open-ended answers was altruism, and gratitude for being able to help others. On the other hand, few participants commented on the complexity of milk expression or reported that additional restrictions might discourage them from donating. Conclusion Most participating mothers were already giving foremilk and hindmilk. A significant proportion of respondents said they would agree to change their expression habits in favour of giving hindmilk to be used for only the most fragile infants. More information is needed on how changing recommendations for milk expression might impact the supply and caloric content of mothers’ milk.

Enveloppes psychiques précoces : la difficulté d’être contenant auprès d’un bébé en retrait relationnel

ContextAutism spectrum disorder (ASD) results from a complex interaction between innate factors of the infant and their environment. Many risk factors have been identified. The difficulties in physical organization of at-risk children can allow us to identify the most fragile infants at birth. The baby in relational withdrawal can teach us about the part played by the infant in the weaving of early psychic envelopes. Research on babies who have become autistic children demonstrates disturbances in their motor skills, from their general movements to difficulties with body organization. The infant's sensorimotor difficulties hinder the expression of subjectivity. They also have an impact on the parents’ ability to interpret the signs coming from the baby. It is difficult for a parent to be the receptacle of the intentions of a baby who does not seem to be addressing its parent. An accompaniment of the parents supports them in their capacity to provide a secure “container” for their baby. A transdisciplinary team ensuring the continuity of the group psychic envelope may be necessary to establish harmony between the baby and their environment. ObjectivesThe goal of early post-natal care is to support parents so that they feel they are the receptacle to the baby's intentions. We want the baby to be able to actively engage in the relationship with its parent from the first months of its life, despite any sensorimotor difficulties that may be present. MethodIn this theoretical reflection on the difficulties of containment with a baby in relational withdrawal, we develop the theoretical-clinical bases which underlie our work as care providers. We focus here mainly on supporting parents in the containing function they occupy as the organizing center of their baby's instinctual life. ResultsThe result targeted by this treatment is the entry of the baby into goal-directed movement towards the other from 4 months, as evaluated by the Préaut grid, within the framework of a pleasant relationship of shared pleasure. We promote the establishment of a relationship in which the parent can both perceive the signs emitted by their baby while being attentive to their own internal experience. Particular attention is paid to joint listening. From this theoretical-clinical base stems the current practice of a transdisciplinary team and two ongoing research projects.

Providing Continuity in Infant Mental Health Services for Medically Fragile Infants and Their Families

Having a baby who is prenatally or postnatally diagnosed with a medical condition places considerable stress on the parents, infants, and their developing relationship. Infant mental health (IMH) services offer an opportunity to address the challenges and support the parent-infant relationship. The present study outlined a continuum of care IMH program embedded within various medical settings of a large metropolitan children’s hospital. Applications of IMH principles within the fetal care center, neonatal intensive care unit, high risk infant follow-up clinic, and the patient’s home are described. Descriptive data about families served across settings and a case study are provided in order to illustrate the implementation of this unique IMH intervention model.

Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative.

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.

Safety of Rotavirus Vaccination in Preterm Infants Admitted in Neonatal Intensive Care Units in Sicily, Italy: A Multicenter Observational Study.

Rotavirus (RV) is among the most common vaccine-preventable diseases in children under five years of age. Despite the severity of rotavirus pathology in early childhood, rotavirus vaccination for children admitted to the neonatal intensive care unit (NICU), who are often born preterm and with various previous illnesses, is not performed. This multicenter, 3-year project aims to evaluate the safety of RV vaccine administration within the six main neonatal intensive care units of the Sicilian Region to preterm infants. Methods: Monovalent live attenuated anti-RV vaccination (RV1) was administered from April 2018 to December 2019 to preterm infants with gestational age ≥ 28 weeks. Vaccine administrations were performed in both inpatient and outpatient hospital settings as a post-discharge follow-up (NICU setting) starting at 6 weeks of age according to the official immunization schedule. Any adverse events (expected, unexpected, and serious) were monitored from vaccine administration up to 14 days (first assessment) and 28 days (second assessment) after each of the two scheduled vaccine doses. Results: At the end of December 2019, 449 preterm infants were vaccinated with both doses of rotavirus vaccine within the six participating Sicilian NICUs. Mean gestational age in weeks was 33.1 (±3.8 SD) and the first dose of RV vaccine was administered at 55 days (±12.9 SD) on average. The mean weight at the first dose was 3388 (SD ± 903) grams. Only 0.6% and 0.2% of infants reported abdominal colic and fever above 38.5 °C in the 14 days after the first dose, respectively. Overall, 1.9% EAEs were observed at 14 days and 0.4% at 28 days after the first/second dose administration. Conclusions: Data obtained from this study confirm the safety of the monovalent rotavirus vaccine even in preterm infants with gestational age ≥ 28 weeks, presenting an opportunity to improve the vaccination offer both in Sicily and in Italy by protecting the most fragile infants who are more at risk of contracting severe rotavirus gastroenteritis and nosocomial RV infection.

Maltreatment and NICU Infants

Child maltreatment is a concern for NICU infants who have special care needs at discharge. Improving mother-infant attachment through breastfeeding in a NICU environment may reduce maltreatment for this high-risk, vulnerable population. Breastfeeding an infant in the NICU is a complicated caretaking task yet provides an opportunity to overcome parenting challenges associated with a medically fragile infant by promoting the development of the maternal-infant attachment bond. Breastfeeding can serve as a prevention strategy for child maltreatment by improving attachment and bonding that is oftentimes disrupted between the NICU infant and mother due to the hospitalization. Social workers serve a pivotal role in preventing child maltreatment through education, promotion, and support of breastfeeding policies. This article highlights the role of social work in enhancing mother-infant attachment and advocating for NICU policies that support attachment therefore preventing maltreatment.

Neonatal Intensive Care Workflow Analysis Informing NEC-Zero Clinical Decision Support Design.

Decision support in neonatal ICUs is needed, especially for prevention and risk awareness of the devastating complication of necrotizing enterocolitis, a major cause of emergency surgery among fragile infants. The purpose of this study was to describe the current clinical workflow and sociotechnical processes among clinicians for necrotizing enterocolitis risk awareness, timely recognition of symptoms, and treatment to inform decision support design. A qualitative descriptive study was conducted. Focus groups were held in two neonatal ICUs (five groups in Unit A and six in Unit B). Transcripts were analyzed using content analysis and compared with field notes. Clinicians (N = 27) included nurses (37%), physicians (30%), neonatal nurse practitioners (19%), and other staff (16%). Workflow processes differed for nurses (who see necrotizing enterocolitis signs and notify providers to order diagnostic tests and treatments) and providers (who receive notification of necrotizing enterocolitis concern and then decide how to act). Clinicians desired (1) a necrotizing enterocolitis-relevant dashboard to support nutrition tracking and necrotizing enterocolitis recognition; (2) features to support decision-making (eg, necrotizing enterocolitis risk and adherence scoring); (3) breast milk tracking and feeding clinical decision support; (4) tools for necrotizing enterocolitis surveillance and quality reporting; and (5) general EHR optimizations to improve user experience.

Fibrinolytic (Thrombolytic) Therapy for Post Intraventricular Hemorrhagic Hydrocephalus in Preterm Infants.

While the survival rate of preterm infants has increased dramatically over the last few decades, intraventricular hemorrhage and subsequent hydrocephalus remain major unsolved problems in neonatal intensive care. Once intraventricular hemorrhage occurs, severe neurological sequelae are inevitable. Treatment of this complicated pathology and achievement of favorable neurofunctional outcomes in fragile infants are crucial challenges for pediatric neurosurgeons. Fibrinolytic therapy, which chemically dissolves hematoma, is a promising and useful treatment method. In this paper, the historical background of fibrinolytic therapy for postintraventricular hemorrhagic hydrocephalus in preterm infants is reviewed and a recent method of fibrinolytic therapy using urokinase is introduced.

The role of paediatrics in the abortion debate.

The role of paediatrics in the abortion debate.

Fragile Infant Forums for Implementation of IFCDC Standards Key Cornerstone of the IFCDC Standards – Environments Conducive to Developmental, Family-Centered Care

Fragile Infant Forums for Implementation of IFCDC Standards Key Cornerstone of the IFCDC Standards – Environments Conducive to Developmental, Family-Centered Care

White Paper Executive Summary for the First Fragile Infant Forum for Integration of Standards (FIFI-S): Feeding, Eating, and Nutrition Delivery based on the Recommended Standards, Competencies, and Best Practices for Infant and Family-Centered Developmental Care in Intensive Care Monrovia, CA July 13-15, 2022

White Paper Executive Summary for the First Fragile Infant Forum for Integration of Standards (FIFI-S): Feeding, Eating, and Nutrition Delivery based on the Recommended Standards, Competencies, and Best Practices for Infant and Family-Centered Developmental Care in Intensive Care Monrovia, CA July 13-15, 2022