Surviving and Thriving with Critical Congenital Heart Disease: The impact on motor development, physical activity and fitness throughout childhood

Abstract

The survival rates of children with a serious congenital heart defect have improved dramatically in recent years due to significant advances in cardiac surgery. The first aim of this thesis, which is part of the Congenital Heart Disease (CHD) - life span study, was to gain insight into the severity, prevalence and (early) predictors of developmental problems in children with a congenital heart defect. Secondly, the research explores the concerns and experiences of parents regarding the development and received care of their child with CHD. Emphasizing the importance of parental involvement for enhancing care quality and better alignment with family needs. The thesis reveals that children undergoing early cardiac surgery are at heightened risk of motor impairments, reduced activity levels, and cardiorespiratory fitness in their first decade, particularly those with a single ventricle physiology or an aortic arch anomaly. Furthermore, motor outcomes in all diagnostic groups appear to be moderately stable over time, and the number of children with motor impairment increased over time. Multiple factors contribute to this risk. Factors such as diagnosis and operative procedures contribute to this risk, while neonatal brain MRI serves as a predictive "biomarker." Additionally, environmental factors such as parental perceptions and parenting styles play a role in individual risk. To safeguard quality of life, long-term outcomes and cardiovascular health of children with CHD, systematic developmental observations from early childhood to adulthood are recommended. This entails a tailored, family-centered multidisciplinary follow-up program, addressing neurological development, physical activity, cardiorespiratory condition, and mental well-being of the CHD patient throughout their life trajectory and should also encompass the wellbeing of the family system.