The COVID pandemic has had deleterious effects on the mental health of the global population. Parents of children with CHD were particularly vulnerable to negative mental health outcomes such as depression, anxiety, and perceived stress. A better understanding of the CHD parent experiences, needs, and concerns while navigating the healthcare system during a pandemic is needed.

Online survey responses from 71 parents of young children with CHD representing families across the United States of America and Canada were analysed. Qualitative data were collected one year into the COVID pandemic. Thematic analysis was used to examine responses to the open-ended question “What would you like healthcare professionals (doctors, nurses) to know about your experience of being a parent with a child with CHD during the COVID-19 pandemic?.”

Two major themes with subthemes and an umbrella theme emerged from the parents’ responses (1) Pandemic Parenting: The Emotional Toll of Hospital Visitation Restrictions, Dealing with Social Distancing, Feeling Isolated, Decision Making in Uncertainty, and Playing it Safe versus Returning to Normal and (2) Unmet Expectations of Care: Needing Information, Wanting Empathy, Requesting Respect, Questioning Care Quality, and the umbrella theme of: Our Lives were Turned Upside Down.

CHD parents describe a negative impact of healthcare-related challenges during the COVID pandemic. These findings may offer insight to how healthcare professionals can better support the mental health and care burden of CHD parents during future pandemics.

Monitoring cerebral and renal near-infrared spectroscopy for regional venous oxygenation is a common practice in the postoperative care of neonates recovering from surgery for CHD. In this study, we aimed to test the feasibility of using this technology for monitoring changes in splanchnic perfusion during feeds in infants recovering from cardiac surgery.

We monitored renal and splanchnic near-infrared spectroscopy in 29 neonates once recovered from the critical postoperative state and tolerating full enteral nutrition. Infants were tested over 3 feeds for splanchnic regional oxygenation (rO2), arterial to splanchnic saturation difference and splanchnic to renal regional oxygenation ratio.

Splanchnic regional oxygenation data were obtained with no failure or interruptions. Interclass correlation for agreement between measurements suggested good repeatability: 0.84 at baseline and 0.82 at end of feed. Infants with physiologic repair (n = 19) showed a trend towards increased splanchnic regional oxygenation at the end of feeds and were more likely to achieve regional oxygenation > 50% compared to infants with shunt-dependent circulation (n = 10, p = 0.02). Calculating AVO2 and regional oxygenation index did not result in improved test sensitivity.

Monitoring splanchnic regional oxygenation during feeds for infants recovering from congenital heart surgery is feasible and reliable. These results suggest that near-infrared spectroscopy could be further studied as a tool for bedside monitoring to assist in feeding management and prevention of necrotising enterocolitis in this sensitive patient population.

Electrocardiograms are frequently obtained in infants and children. Training specific to paediatric electrocardiogram interpretation is necessary given that cardiac physiology and electrocardiogram findings in children are different than adults and change throughout infancy and childhood. Distributed practice may be an effective method to improve paediatric residency electrocardiogram education efforts.

A pre-survey was administered to paediatric and internal medicine/paediatrics residents to ascertain baseline comfort with electrocardiogram interpretation. Subsequently, residents were emailed a clinical vignette with an associated electrocardiogram and multiple-choice question 1–2 times monthly. After submitting their answer, residents were taken to a webpage explaining key concepts explored in the clinical vignette. After 6 and 12 months, a survey was administered asking residents to again rate their confidence in the same electrocardiogram interpretation skills.

The longitudinal email-based curriculum increased exposure to electrocardiogram training. Six months of participation in the curriculum correlated with significant increases in confidence in electrocardiogram interpretation skills. While there was no further increase in confidence seen at 12 months, the improvement seen at 6 months was durable. Participation in the curriculum most significantly correlated with changes in confidence in ability to utilise a stepwise approach for electrocardiogram interpretation.

The curriculum resulted in durable improvement in confidence in electrocardiogram interpretation skills for paediatric residents at our centre, suggesting that email-based distributive practice can be an effective method for skill and knowledge improvement for complex educational topics.

Diastolic heart failure may be noted in paediatric patients with CHD, cardiomyopathy, or malignancies requiring chemotherapy, but the available data are scarce, and often derived from adult trials or based on theoretic or anecdotal evidence.

Data between 2016 and 2021 were obtained from Pediatric Health Information System database. Patients <18 years of age with isolated diastolic heart failure admitted to ICU at some point during admission were included. They were divided into patients with and without inpatient mortality. Patients’ demographics, comorbidities using ICD-10 codes, and pharmacologic interventions were also recorded. Univariate analysis was done in demographics, comorbidities, pharmacologic interventions, and mechanical interventions between admissions with and without mortality. Multivariable logistic regression was done for inpatient mortality and multivariable linear regression was done for total hospital length of stay in survivors.

Isolated diastolic heart failure comprised 0.5% of critically ill paediatric patients. A total of 121 (5%) experienced mortality among the 2,273 admissions in the final analyses. Milrinone and angiotensin converting enzyme inhibitor were found to be associated with decreased mortality. Increasing age and diuretics were associated with decreased total hospital length of stay in survivors.

In the cohort studied, isolated diastolic left heart failure has a 5% mortality. Several comorbidities and interventions are associated with increased mortality with milrinone and angiotensin converting enzyme inhibitors being associated with decreased risk of mortality. When only admissions with survival to discharge are considered, older age and diuretics are associated with lower total hospital length of stay.

CHD predisposes children to neurodevelopmental delays. Frequent, prolonged hospitalisations during infancy prevent children with heart disease from participating in recommended language and cognitive development programmes, such as outpatient early childhood literacy programmes, and contribute to caregiver stress, a risk factor for adverse developmental outcomes. This study aims to describe the implementation of a single-centre inpatient early childhood literacy programme for hospitalised infants with heart disease and assess its impact on reading practices and patient–family hospital experience.

Admitted infants ≤1 year old receive books, a calendar to track reading frequency, and reading guidance at regular intervals. Voluntary feedback is solicited from caregivers using an anonymous, QR-code survey on books. A prospective survey also assessed programme impact on hospital experience.

From February 2021 to November 2023, the Books@Heart programme provided 1,293 books to families of 840 infants, of whom 110 voluntarily submitted feedback. Caregivers reported a significant improvement in access to books (p < 0.001) and increased reading frequency after learning about Books@Heart (p = 0.003), with the proportion reading to their child daily increasing from 27% to 62%. Among 40 prospective survey responses, caregivers reported feeling a sense of personal fulfillment (60%), self-confidence (30%), connection (98%), and personal well-being (40%) while reading to their child.

An inpatient early childhood literacy programme is a well-received intervention for infants with heart disease that promotes development, improves book access, increases reading exposure, and engages families. Further studies are needed to assess its impact on sustained reading practices and neurodevelopmental outcomes.

Preoperative pneumonia in children with CHD may lead to longer stays in the ICU after surgery. However, research on the associated risk factors is limited. This study aims to evaluate the pre-, intra-, and postoperative risk factors contributing to extended ICU stays in these children.

This retrospective cohort study collected data from 496 children with CHD complicated by preoperative pneumonia who underwent cardiac surgery following medical treatment at a single centre from 2017 to 2022. We compared the clinical outcomes of patients with varying ICU stays and utilised multivariate logistic regression analysis and multiple linear regression analyses to evaluate the risk factors for prolonged ICU stays.

The median ICU stay for the 496 children was 7 days. Bacterial infection, severe pneumonia, and Risk Adjustment for Congenital Heart Surgery-1 were independent risk factors for prolonged ICU stays following cardiac surgery (P < 0.05).

CHD complicated by pneumonia presents a significant treatment challenge. Better identification of the risk factors associated with long-term postoperative ICU stays in these children, along with timely diagnosis and treatment of respiratory infections in high-risk populations, can effectively reduce ICU stays and improve resource utilisation.

Complexity stratification for CHD is an integral part of clinical research due to its heterogenous clinical presentation and outcomes. To support our ongoing research efforts into CHD requiring disease severity stratifications, a simplified CHD severity classification system was developed and verified, with potential utility for clinical researchers without specialist CHD knowledge or access to clinical/medical records.

A two-tiered analysis approach was undertaken. First-tier analysis included the audit of a comprehensive system based on: i) timing of intervention, ii) cardiac morphology, and iii) cardiovascular physiology using real patient data (n = 30), across 10 common CHD lesions. Second-tier analysis allowed for a simplified version of the classification system using morphology as a stand-alone predictor. Twelve clinicians of varying specialities involved in CHD care ranked 10 common lesions from least to most severe based on typical presentation and clinical course.

First-tier analysis identified that cardiac morphology was the principal driver of complexity. Second-tier analysis largely confirmed the ranking and classification of the lesions into the broad CHD severity groups, although some variation was noted, specifically among non-cardiac specialists. This simplified version of the classicisation system, with morphology as a stand-alone predictor of severity, allowed for effective stratification for the purposes of analysis.

The findings presented here support this comprehensive and simple CHD severity classification system with broad utility in CHD research, particularly among clinicians and researchers with limited knowledge of CHD. The model may be applied to produce locally relevant research tools.

Thromboembolism is a complication in paediatric patients with CHD requiring cardiac surgery. Previous research has focused on post-operative thromboembolism. This study aimed to describe thromboembolism frequency before or after cardiac surgery in children with CHD.

We performed a single-centre retrospective study from October 2020 to June 2023 (inclusive). Patients were eligible for inclusion if they were <21 years of age and underwent cardiac surgery. Outcomes of interest included the occurrence and characteristics of thromboembolism in the 12 months before and after surgery, antithrombotic therapies, recurrent thromboembolism, and clinically significant bleeding.

Among 260 patients included, 35 (13.5%) developed an index thromboembolism. Twelve (34.3%) patients had an index thromboembolism <12 months before surgery and 23 (65.7%) had an index thromboembolism <12 months after surgery, including 8 (22.9%) patients who had thromboembolism during both exposure periods. The median interquartile range (IQR) time of thromboembolism relative to cardiac surgery was –26 (–4 to –140) days and 15 (4 to 41) days, respectively. Seven (20%) patients had arterial, 18 (51.4%) venous, and 3 (8.6%) had both arterial and venous thromboembolism. Median (IQR) antithrombotic therapy duration was 49 (24–84) days. Nine (25.7%) patients developed recurrent thromboembolism and five (14.3%) patients experienced clinically significant bleeding.

The risk of thromboembolism and recurrence is high both before and after cardiac surgery among paediatric patients with CHD. Prospective multi-centre studies should seek to identify risk factors for preoperative and postoperative thromboembolism to inform the design of future risk-stratified thromboembolism prevention trials in children with CHD.

Outcomes for children with heart disease improved over the past decades. Quality improvement (QI) research in paediatric cardiac critical care is a key driver of improvement. The availability and variability of QI research across the field is unknown. This project represents a step in understanding the role. The Pediatric Cardiac Intensive Care Society (PCICS) can serve to support institutions’ needs, drive collaborations, and utilise available infrastructure at member institutions for improvement work.

The PCICS Quality Improvement and Safety Committee developed a survey to assess the state of QI research. The survey was disseminated over several months and available via QR code at the World Congress of Pediatric Cardiology and Cardiac Surgery in 2023.

Fifty-eight respondents completed the survey representing at least 38 unique institutions. Most respondents participated in QI research (52/58, 90%). Most QI projects were single centre (41% of respondents), and of those, the majority were from a minority of institutions (13 institutions [34% of total institutions]). QI support is available at slightly more than half of units, and 55% (32/58) have access to a QI specialist. QI support and rate of publications is significantly lower for small/medium units as compared to large units. Respondents suggested most interest from PCICS in networking with other members with similar project ideas (50/58, 86%).

PCICS member institutions are committed to QI research, with limitations in support, local specialists, and networking. Increasing connectivity and accessibility to QI resources may reduce burden to individual members and institutions to achieve QI research.

Mobile health has been shown to improve quality, access, and efficiency of health care in select populations. We sought to evaluate the benefits of mobile health monitoring using the KidsHeart app in an infant CHD population.

We reviewed data submitted to KidsHeart from parents of infants discharged following intervention for high-risk CHD lesions including subjects status post stage 1 single ventricle palliation, ductal stent or surgical shunt, pulmonary artery band, or right ventricular outflow tract stent. We report on the benefits of a novel mobile health red flag scoring system, mobile health growth/feed tracking, and longitudinal neurodevelopmental outcomes tracking.

A total of 69 CHD subjects (63% male, 41% non-white, median age 28 days [interquartile range 20, 75 days]) were included with median mobile health follow-up of 137 days (56, 190). During the analytic window, subjects submitted 5700 mobile health red flag notifications including 245 violations (mean [standard deviation] 3 ± 3.96 per participant) with 80% (55/69) of subjects submitting at least one violation. Violations precipitated 116 interventions including hospital admission in 34 (29%) with trans-catheter evaluation in 15 (13%) of those. Growth data (n = 2543 daily weights) were submitted by 63/69 (91%) subjects and precipitated 31 feed changes in 23 participants. Sixty-eight percent of subjects with age >2 months submitted at least one complete neurodevelopment questionnaire.

In our initial experience, mobile health monitoring using the KidsHeart app enhanced interstage monitoring permitting earlier intervention, allowed for remote tracking of growth feeding, and provided a means for tracking longitudinal neurodevelopmental outcomes.