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.

Parents' decision-making for their foetus or neonate with a severe congenital heart defect.

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

Integrated Multimodality Telemedicine to Enhance In-Home Care of Infants During the Interstage Period.

Performing interstage home monitoring using digital platforms (teleIHM) is becoming commonplace but, when used alone, may still require frequent travel for in-person care. We evaluated the acceptability, feasibility, and added value of integrating teleIHM with synchronous telemedicine video visits (VVs) and asynchronous video/photo sharing (V/P) during the interstage period. We conducted a descriptive program evaluation of patient-families receiving integrated multimodality telemedicine (teleIHM + VV + V/P) interstage care from 7/15/2018 to 05/15/2020. First, provider focus groups were conducted to develop a program logic model. Second, patient characteristics and clinical course were reviewed and analyzed with univariate statistics. Third, semi-structured qualitative interviews of family caregivers' experiences were assessed using applied thematic analysis. Within the study period, 41 patients received teleIHM + VV + V/P care, of which 6 were still interstage and 4 died. About half (51%) of patients were female and 54% were a racial/ethnic minority. Median age was 42 days old (IQR 25, 58) at interstage start, with a median of 113 total days (IQR 72, 151). A total of 551 VVs were conducted with a median 12 VVs (IQR 7, 18) per patient. Parents sent a median 2 pictures (IQR 0-3, range 0-82). Qualitatively, families reported an adjustment period to teleIHM, but engaged favorably with telemedicine overall. Families felt reassured by the oversight routine telemedicine provided and identified logistical and clinical value to VVs above teleIHM alone, while acknowledging trade-offs with in-person care. Integration of multimodality telemedicine is a feasible and acceptable approach to enhance in-home care during the interstage period.

Interstage Home Monitoring for Infants With Single Ventricle Heart Disease: Education and Management: A Scientific Statement From the American Heart Association.

This scientific statement summarizes the current state of knowledge related to interstage home monitoring for infants with shunt-dependent single ventricle heart disease. Historically, the interstage period has been defined as the time of discharge from the initial palliative procedure to the time of second stage palliation. High mortality rates during the interstage period led to the implementation of in-home surveillance strategies to detect physiologic changes that may precede hemodynamic decompensation in interstage infants with single ventricle heart disease. Adoption of interstage home monitoring practices has been associated with significantly improved morbidity and mortality. This statement will review in-hospital readiness for discharge, caregiver support and education, healthcare teams and resources, surveillance strategies and practices, national quality improvement efforts, interstage outcomes, and future areas for research. The statement is directed toward pediatric cardiologists, primary care providers, subspecialists, advanced practice providers, nurses, and those caring for infants undergoing staged surgical palliation for single ventricle heart disease.

Creating Opportunities for Optimal Nutritional Experiences for Infants With Complex Congenital Heart Disease.

INTRODUCTION: To our knowledge, successful breastfeeding in the population with single ventricle congenital heart disease has not been reported in the literature, particularly during the interstage period. METHOD: A retrospective case study including inpatient nutrition and a complete history of daily logs with the home surveillance monitoring program was performed. RESULTS: Successful full breastfeeding (exceeding prescribed weight growth goals) after Stage I surgery was achieved during the interstage period. The infant was discharged at 3.41 kg, not consistently breastfeeding, and progressed to 7.05 kg at 5 months of age, fully breastfeeding. CONCLUSION: Supporting breastfeeding for infants who have undergone repairs for single ventricle anatomy can be challenging but can be accomplished. It requires a concerted team effort, clear communication, and collaboration among caregivers, the mother, and her supporters.

Nutrition care for newborns with congenital heart disease.

Those health care professionals entrusted with the care of infants with congenital heart disease require an understanding of the unique nutritional needs of this population. This article defines the congenital, physiologic, and nutritional variables encountered in this population. The nutritional needs, multi-factorial sources of undernutrition, and consequences of inadequate nutrition in infants with congenital heart disease are discussed, as well as medical and nutritional management strategies intended to optimize growth and reduce morbidity.

A medical strategy to reduce persistent chest tube drainage after the fontan operation.

A standardized medical regimen aimed at reducing pleural effusions after the Fontan operation was compared with a randomly selected retrospective cohort. The duration of chest tube drainage, hospital stay, and the need for pleural sclerosis were significantly reduced, indicating that postoperative management plays an important role in reducing this morbidity.