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

Background: 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.

Objectives: 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.

Methods: 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.

Caring for hearts and minds: a quality improvement approach to individualized developmental care in the cardiac intensive care unit.

Introduction: Infants with congenital heart disease (CHD) are at high risk for developmental differences which can be explained by the cumulative effect of medical complications along with sequelae related to the hospital and environmental challenges. The intervention of individualized developmental care (IDC) minimizes the mismatch between the fragile newborn brain's expectations and the experiences of stress and pain inherent in the intensive care unit (ICU) environment.

Methods: A multidisciplinary group of experts was assembled to implement quality improvement (QI) to increase the amount of IDC provided, using the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), to newborn infants in the cardiac ICU.

Sleeping Safe and Sound: A Multidisciplinary Hospital-wide Infant Safe Sleep Quality Improvement Initiative.

Introduction: Promoting safe sleep to decrease sudden unexpected infant death is challenging in the hospital setting.

Local Problem: Concern for adherence to safe sleep practice across inpatient units at a large pediatric hospital.

Methods: Used quality improvement methodologies to promote safe sleep across all units.

Optimising motor development in the hospitalised infant with CHD: factors contributing to early motor challenges and recommendations for assessment and intervention.

Background: Neurodevelopmental challenges are the most prevalent comorbidity associated with a diagnosis of critical CHD, and there is a high incidence of gross and fine motor delays noted in early infancy. The frequency of motor delays in hospitalised infants with critical CHD requires close monitoring from developmental therapies (physical therapists, occupational therapists, and speech-language pathologists) to optimise motor development. Currently, minimal literature defines developmental therapists' role in caring for infants with critical CHD in intensive or acute care hospital units.

Inpatient Screening for Early Identification of Developmental Risk in Infants with Congenital Heart Defects.

Objective: To assess the utility of an inpatient standardized developmental screener for early identification of developmental risk in infants with a congenital heart defect (CHD).

Study Design: This was a retrospective, observational study with convenience sample of postoperative infants with CHD (aged 3-12 months) who underwent neurodevelopmental screening with the Bayley Scales of Infant and Toddler Development Screening Test, Third Edition (Bayley-III Screener) just before discharge. Follow-up testing included outpatient Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III) (12-42 mo).

Impact of Residual Lesion Severity on Neurodevelopmental Outcomes Following Congenital Heart Surgery in Infancy and Childhood.

Children with congenital heart disease are at increased risk of neurodevelopmental delay throughout their lifespan. This risk is exacerbated following congenital heart surgery (CHS) in infancy. However, there are few modifiable risk factors for postoperative neurodevelopmental delay.

Preterm congenital heart disease and neurodevelopment: the importance of looking beyond the initial hospitalization.

Congenital heart disease (CHD) and prematurity are leading causes of infant mortality in the United States. Infants with CHD born prematurely are often described as facing "double jeopardy" with vulnerability from their underlying heart disease and from organ immaturity. They endure additional complications of developing in the extrauterine environment while healing from interventions for heart disease.

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.

Developmental Care for Hospitalized Infants With Complex Congenital Heart Disease: A Science Advisory From the American Heart Association.

Developmental disorders, disabilities, and delays are a common outcome for individuals with complex congenital heart disease, yet targeting early factors influencing these conditions after birth and during the neonatal hospitalization for cardiac surgery remains a critical need. The purpose of this science advisory is to (1) describe the burden of developmental disorders, disabilities, and delays for infants with complex congenital heart disease, (2) define the potential health and neurodevelopmental benefits of developmental care for infants with complex congenital heart disease, and (3) identify critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease. This call to action targets research scientists, clinicians, policymakers, government agencies, advocacy groups, and health care organization leadership to support funding and hospital-based infrastructure for developmental care in the complex congenital heart disease population.

Assessment and management of feeding difficulties for infants with complex CHD.

Early surgical intervention in infants with complex CHD results in significant disruptions to their respiratory, gastrointestinal, and nervous systems, which are all instrumental to the development of safe and efficient oral feeding skills. Standardised assessments or treatment protocols are not currently available for this unique population, requiring the clinician to rely on knowledge based on neonatal literature. Clinicians need to be skilled at evaluating and analysing these systems to develop an appropriate treatment plan to improve oral feeding skill and safety, while considering post-operative recovery in the infant with complex CHD.

Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.

Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems.

Developmental Care Practice and Documentation Variability in the Cardiac ICU.

Objectives: Describe variability in developmental care practices, as documented in the electronic health record, for infants undergoing congenital heart surgery.

Design: Multicenter, retrospective, cohort study.

Setting: Six pediatric cardiac centers.

Neurological features in infants with congenital heart disease.

Aim: To report neurological examination findings at 5 to 12 months of age in infants with congenital heart disease (CHD) and to identify predictors of abnormal neurological examination.

Method: This retrospective observational study included infants who required cardiac surgery at less than 3 months of age and underwent a standard neurological examination from a neurologist in the cardiac neurodevelopmental outpatient clinic between age 5 months and 12 months. Predictors for abnormal neurological examination (concerns on structured developmental history, demographic factors, medical history, and newborn neurodevelopmental assessment) were considered for multivariate regression.

Neurodevelopmental and psychosocial interventions for individuals with CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative.

In 2018, the Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative convened through support from an R13 grant from the National Heart, Lung, and Blood Institute to survey the state of neurodevelopmental and psychosocial intervention research in CHD and to propose a slate of critical questions and investigations required to improve outcomes for this growing population of survivors and their families. Prior research, although limited, suggests that individualised developmental care interventions delivered early in life are beneficial for improving a range of outcomes including feeding, motor and cognitive development, and physiological regulation. Interventions to address self-regulatory, cognitive, and social-emotional challenges have shown promise in other medical populations, yet their applicability and effectiveness for use in individuals with CHD have not been examined.

Disruptions in the development of feeding for infants with congenital heart disease.

Congenital heart disease (CHD) is the most common birth defect for infants born in the United States, with approximately 36,000 affected infants born annually. While mortality rates for children with CHD have significantly declined, there is a growing population of individuals with CHD living into adulthood prompting the need to optimise long-term development and quality of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental challenges and feeding difficulties.

Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative.

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities.

A Collaborative Learning Assessment of Developmental Care Practices for Infants in the Cardiac Intensive Care Unit.

Objective: Assess differences in approaches to and provision of developmental care for infants undergoing surgery for congenital heart disease.

Study Design: A collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at 6 pediatric heart centers. Round robin site visits were completed with structured site visit goals and postvisit reporting.

Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period.

Objective: Mortality rates for children with congenital heart disease (CHD) have significantly declined, resulting in a growing population with associated neurodevelopmental disabilities. American Heart Association guidelines recommend systematic developmental screening for children with CHD. The present study describes results of inpatient newborn neurodevelopmental assessment of infants after open heart surgery.

Filling a significant gap in the cardiac ICU: implementation of individualised developmental care.

Mortality rates among children with CHD have significantly declined, although the incidence of neurological abnormalities and neurodevelopmental impairment has increased. Research has focussed on outcomes, with limited attention on prevention and intervention. Although some developmental differences and challenges seen in children with CHD are explained by the cumulative effect of medical complications associated with CHD, many sequelae are not easily explained by medical complications alone.

Preference for infant-directed speech in preterm infants.

The current study explores the effects of exposure to maternal voice on infant sucking in preterm infants. Twenty-four preterm infants averaging 35 weeks gestational age were divided randomly into two groups. A contingency between high-amplitude sucking and presentation of maternal voice was instituted for one group while the other group served as a yoked control.

School-age effects of the newborn individualized developmental care and assessment program for preterm infants with intrauterine growth restriction: preliminary findings.

Background: The experience in the newborn intensive care nursery results in premature infants' neurobehavioral and neurophysiological dysfunction and poorer brain structure. Preterms with severe intrauterine growth restriction are doubly jeopardized given their compromised brains. The Newborn Individualized Developmental Care and Assessment Program improved outcome at early school-age for preterms with appropriate intrauterine growth.

School Age Effects of the Newborn Individualized Developmental Care and Assessment Program for Medically Low-Risk Preterm Infants: Preliminary Findings.

Background: By school age, even low risk moderately preterm-born children show more neuro-cognitive deficits, underachievement, behavioral problems, and poor social adaptation than full-term peers.

Aim: To evaluate the outcomes at school-age for moderately preterm-born children (29-33 weeks gestational age), appropriate in growth for gestational age (AGA) and medically at low-risk, randomized to Newborn Individualized Developmental Care and Assessment Program (NIDCAP) or standard care in the Newborn Intensive Care Unit. At school-age, the experimental (E) group will show better neuropsychological and neuro-electrophysiological function, as well as improved brain structure than the control (C) group.

Effects of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) at age 8 years: preliminary data.

The current study reports the effects of NIDCAP (Newborn Individualized Developmental Care and Assessment Program) at 8 years of age for a randomized controlled trial of 38 very early born (< or =29 weeks postmenstrual age), high-risk preterm infants. It was hypothesized that the experimental group at school age in comparison with the control group would perform significantly better neuropsychologically and neuroelectrophysiologically. Twenty-two (11 control, 11 experimental) children of the original 38 (18 control, 20 experimental) participants were studied at school age with a detailed neuropsychological battery and with EEG spectral coherence measures.

Early experience alters brain function and structure.

Objective: To investigate the effects of early experience on brain function and structure.

Methods: A randomized clinical trial tested the neurodevelopmental effectiveness of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Thirty preterm infants, 28 to 33 weeks' gestational age (GA) at birth and free of known developmental risk factors, participated in the trial.