What’s one improvement that could further improve length and quality of life for children with congenital heart disease as they age?

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 - d-kimDue to advances in medical, surgical and transcatheter therapies, there are now more adults living with congenital heart disease (CHD) than children. Development of accessible integrated transition pathways from pediatric healthcare systems to specialized adult CHD centers will be essential to improve cardiac health, longevity and quality of life for children as they age. There are numerous potential barriers, such as inadequate self-understanding of the nature of their heart disease, separation from parental support, insurability concerns and lack of knowledge of available support resources, that can have a negative impact on the health of young adults living with CHD. Organized planning and access to centers with specialization in the management of adult CHD can prevent long periods of being lost to follow up and potentially irreversible decline in quality of life.

Dennis W. Kim, MD, PhD

Director, Cardiac Catheterization Labs, Children’s Healthcare of Atlanta-Sibley Heart Center; Cardiology Associate Professor, Emory University, Atlanta

 - z-hijaziThe single most important thing we can do to improve the length and quality of life for ALL patients with congenital heart disease (CHD) is to provide unobstructed, free access to excellent healthcare. This includes diagnosis, management and follow up.

Thousands of children die each year due to the inability to access care at facilities that provide advanced care for these patients. Further, the cost of technology is prohibitive in many countries—from the cost of simple procedures to the cost of advanced technologies (e.g., devices, percutaneous valves). So, if the world society agrees to cover the cost of medical care for every patient with CHD, rest assured that the length and quality of life for hundreds of thousands of children with CHD will improve significantly.

Ziyad M. Hijazi, MD, MPH

Professor of Pediatrics & Medicine, Weill Cornell Medicine; Chair, Department of Pediatrics, and Director, Sidra Cardiac Program, Sidra Medical & Research Center, Doha, Qatar