Background/Objectives: Growth failure is a common complication in children with congenital heart disease (CHD), yet its underlying mechanisms and consequences remain incompletely understood. This review aims to provide a comprehensive overview of growth failure in children with CHD and outline a framework of factors contributing to this condition. Methods: To lay the foundation for this narrative review, several databases were searched using broad search terms related to CHD and growth failure. Results: Growth failure is most pronounced during the first year of life, but often improves after achieving hemodynamic stability through surgical or medical interventions. However, children with complex conditions, such as single-ventricle physiology or multiple heart defects, may experience persistent growth impairment due to chronic disease effects. Specific features of CHD—cyanosis, pulmonary hypertension, and low cardiac output—can further hinder growth by disrupting endocrine function and impairing musculoskeletal development. Long-term use of medications and exposure to repeated diagnostic procedures also contribute to growth failure. Beyond physical effects, growth failure profoundly influences neurodevelopment, psychosocial well-being, and survival outcomes. Based on our review, we have developed a knowledge map to better understand the complexities of growth failure in children with CHD. Conclusions: A thorough understanding of the multifaceted contributors to growth failure in CHD is essential for identifying high-risk children and devising strategies to support optimal growth. Integrating this knowledge into clinical practice can improve long-term outcomes for children with CHD.

Children with congenital heart disease (CHD) often experience growth faltering. However, somatic growth is significantly influenced by genetic and environmental factors. Given the unique genetic and environmental similarities of monozygotic twins, this study aims to evaluate the relationship between CHD and growth faltering, while minimizing the influence of these factors. We retrospectively reviewed data from 41 pairs of twins, where one had CHD and the other did not. Anthropometric measures were collected from birth to 3 years of age. Growth differences within the CHD group were further analyzed based on disease characteristics, including cyanosis, pulmonary artery hypertension (PAH), heart failure (HF), and ventricular physiology. Mixed-effects regression models assessed longitudinal differences between twins, and multiple linear regression analyses identified predictors of anthropometric z-scores at 1 year. The CHD group showed a significant decline in all growth parameters from 1 year of age ( p < .001), with no significant improvement during the observation period. Growth faltering was more common in the CHD group (46.3%) compared to the non-CHD group (7.5%). Within the CHD group, children with HF had significantly lower weight for age z-score and height for age z-score ( p < .05). Being small for gestational age (SGA) independently predicted lower weight and head circumference at 1 year. Conclusion : Children with CHD are at an elevated risk of growth faltering. HF and SGA appear to contribute to growth faltering, highlighting the importance of early recognition and targeted interventions. What is Known Children with congenital heart disease (CHD) are at increased risk for growth faltering, but the independent effect of CHD is not well established. What is New This twin study aims to control genetic and environmental factors, showing that CHD is associated with lower growth and an increased risk of growth faltering. Among affected twins, growth outcomes also vary by disease and clinical characteristics.

To determine the extent to which self-management has been investigated and reported in literature focused on the transition from pediatric to adult healthcare for youth and young adults with childhood-onset chronic conditions (CCCs). An estimated 1.2 million youth with CCCs are expected to enter adulthood annually in the United States. As these youth transition from pediatric to adult health systems, they are at risk for experiencing critical gaps in care continuity and adverse health outcomes. Health care transition models have emerged to address these gaps, with self-management recognized as a critical component of successful transition. The included literature addressed self-management in the context of the transition from pediatric to adult health care for youth and young adults (aged 9–35 years) with CCCs. Results were limited to English-language, peer-reviewed primary research articles. A comprehensive search of six databases (MEDLINE, Embase & Embase Classic, CINAHL Complete, PsycINFO, Cochrane CENTRAL, and Web of Science Core Collect) was completed in November 2024. Each record was screened, assessed for eligibility, and extracted by two independent reviewers using the Covidence platform. Data were analyzed and presented using descriptive statistics. A total of 640 peer-reviewed articles were included. Articles were published between 1989 and April 2025, with the majority (85%) being published post-2014 and originating from the United States (51%). Most studies employed cross-sectional designs (78%) and quantitative methods (61%). Only 89 studies involved an intervention. Study participants included youth or young adults (57%), providers (36%), parents/caregivers (22%), or a combination of these groups (34%). Studies primarily focused on youth with physical conditions (84%) or a combination of condition types (9%). Studies focused solely on intellectual/developmental disabilities (5%) and mental health conditions (<1%) were notably underrepresented. Self-management was primarily examined in relation to condition management only (77%), with 23% of the studies also addressing social and/or community-based outcomes. This scoping review reveals trends and gaps in the health care transition literature. Key gaps include the paucity of research on self-management in youth with intellectual/developmental disabilities and mental health conditions, limited evidence on post-transfer outcomes, and inconsistent approaches to measuring and defining self-management.