About us

Project Background

Congenital Heart Disease (CHD) affects approximately 1 in 100 newborns in the United States, and of these, one fourth will require an intervention in the first year of life. Despite steady improvements in overall mortality and quality of life of patients with CHD over the last couple of decades, treatment of CHD is fraught with multiple challenges and takes a toll on family life. For this project we focused on single ventricle anomalies, assuming that some of the challenges will be common to other congenital heart diseases.

A typical journey for families of children with CHD starts at pregnancy or immediately after birth, and often is prolonged until adulthood. However, some patients are diagnosed well into childhood or even adulthood. Because of the long-term engagement of patients and families with the health system, proper management of CHD requires attention to all aspects of the continuum of care. This engagement transcends childhood, prompting further opportunities to address issues as children become adolescents and ultimately adults, directly in charge of their own care. Attention to the entire lifetime continuum is critical in patients with CHD.

With the goal of improving this lifelong journey of patients with CHD, the Texas Center for Pediatric and Congenital Heart Disease partnered with Dell Medical School's Value Institute for Health and Care and the Design Institute for Health to redesign the way we provide care for patients with congenital heart disease in a more comprehensive/holistic way that considers all different determinants of health, from diagnosis and birth throughout the entire lifetime.