Every year, thousands of families are forever changed by the news that their child has heart disease. Among the most common and serious types are congenital heart defects (CHDs)—structural problems with the heart that are present at birth. In fact, CHDs affect nearly 1 in every 100 babies born in the United States, making them the most common birth defect. For many of these children, the journey to survival begins just days after birth.

Roughly 1 in 4 infants born with a CHD will require life-saving surgery or procedures within their first year. But the challenges don’t stop after the initial operation. Many children need multiple surgeries throughout childhood, along with ongoing medication, monitoring, and medical care. Some may face complications that affect growth, development, and quality of life. Others may be waiting for a heart transplant.

For families, the burden can feel endless. The emotional weight of watching a child fight for their life is often compounded by financial strain, time away from work, and countless hours spent in hospitals. Even with insurance, out-of-pocket expenses for travel, lodging, therapies, and specialized treatments can quickly add up. Access to care is not always equitable, and families from underserved communities often face additional barriers in getting the support they need.