Lifetime Impact of Congenital Heart Disease on a Family from the Perspective of a Third in Birth Order Sibling

Background: Congenital heart disease (CHD) is the number one birth defect reported by the Centers for Disease Control and Prevention [1]. Patients are surviving and thriving into teen and adult years. The evolution of care since the late 1960's for patients and families include routine and unexpected clinic visits, hospitalizations, and procedures. Transitions into acute care systems and subsequent return to chronic care systems are part of the process. This care is required in addition to normal routine health surveillance and illnesses impacting patients, families, resources, and support systems. Recognition of the healthy sibling impact and relationship with chronic health disease is present in the literature with inconsistent results across many diseases. The quality of life literature in CHD is progressing through the years, particularly for patients; however, lifetime healthy sibling impact of CHD continues to be void in the literature. Sibling relationships span the longest time period in a lifetime, typically longer than parents and spouses [2]. Focus on sibling impact of chronic illness is essential to understanding the family dynamics, sibling relationships, roles, and family coping mechanisms when faced with a life-threatening illness like CHD. Method: A Midwestern nuclear intact family is the focus in this case study. In 1968, an infant, second in birth order of 4 siblings, was postnatally diagnosed with complex univentricular CHD requiring repeat surgical and medical follow up throughout his lifetime. This single family review retrospectively spans over four and a half decades from the perspective of third in birth order sibling. Utilizing interviews and personal accounts, a developmental perspective of the impact growing up with an ill sibling throughout childhood and adulthood is reported. Results: Normal developmental milestones of adulthood were achieved by all four siblings including: graduating high school, moving out of the home, marrying, childrearing, and pursuing productive careers. Divorce was not present in the nuclear family and respective adult families. Three of the four siblings graduated with a college degree and a first for our generation. Conclusion: CHD and the acute life threatening issues associated with surgical and medical follow up impacts the family system. Compassion and empathy evolved throughout the lifespan for one sibling. Exposure to emotional, mental, and physical stressors while providing quality health care can be significant. The development of professional compassion fatigue [3] and nursing burnout in the third in birth order sibling was identified. Family resilience was critical to positively moving forward. Eight positive resilience factors were identified as key to maintain a positive focus and live life to the fullest capacity. These included: consistent positive family support, spiritual support, family financial stability, quality health care, strong work ethic, presence of humor, focus on quality of life and normalcy, and drive for adventure and new experiences.