(56) Vulnerability, Connections and Transformation: Positive and Negative Impacts of Complex Congenital Heart Disease on Families

Background: Children with congenital heart disease requiring surgery are at an increased risk for adverse health and developmental outcomes. The negative impacts of congenital heart disease have been investigated: families often experience anxiety, depression, and traumatic stress. However, positive impacts have not been described, leaving an unbalanced understanding of the reality of families.

Objectives: To explore parental perspectives regarding the impact - both positive and negative - of surgical congenital heart disease (CHD) on their life.

Design/Methods: Parents of children 1-4 years old with surgical CHD that presented for cardiology clinic follow-up at a single center in 2023-2024 were interviewed. They were asked about the impacts of their child’s CHD on their life and their family’s life: positive, negative or both. Through open-ended questions, parents were asked to justify their answers. Responses were analyzed using mixed methods.

Results: Among parents (n=100), 7% reported only positive impacts, 86% both positive and negative impacts, and 7% only negative impacts. Positive impacts included: personal growth and transformation (57%): ‘It has made us more empathetic’; stronger relationships and connections with family, friends and community (28%): ‘the community is great everyone is going through something and having a positive outlook’; and medical systems (15%): ‘deeper appreciation for what everyone here does on a daily basis’. The main negative themes reported were the trauma of the experience (27%): ‘It definitely took the fun out of the pregnancy and made it traumatic’; ongoing stress and anxiety (34%): ‘the thing that is the most difficult is that there is no end in sight to it’; loss of normalcy (29%): ‘We literally flipped our lives upside down including our jobs, our kids in order to accommodate the heart condition’.

Conclusions: Parents report both negative and positive impacts when living with a child with complex congenital heart disease. Understanding the challenges faced by families, as well as their sources of positive resilience is important to improve our communication throughout their prenatal, neonatal and follow-up experiences. These perspectives optimize the medical system to decrease negative impacts and harness the potential of positive impacts.