Hole in the Heart ASD

Approximately 1 in 100 babies is born with a congenital heart defect, making CHDs the most common birth defect, occurring 60 times more often than childhood cancer, with prevalence steadily rising among infants.

Hole in the Heart was founded by a New Mexico family after their oldest son was unexpectedly diagnosed with a congenital heart defect at 15. By then his heart had already endured years of silent struggle. The late diagnosis meant years of unanswered questions, missed opportunities for early intervention, and complex medical decisions no family should face alone. In the course of that experience the family found that New Mexico lacked the specialized care, resources, and advocacy that CHD patients need.

Their mission has three parts. Raise awareness about the various types of holes in the heart and other congenital heart defects, and how they affect the lives of children, adolescents, and young adults. Build partnerships to improve timely detection. Advocate for best practices in the timely detection and diagnosis of congenital heart defects.

The organization works through advocacy, education, and community outreach, including CHD education for parents and providers, and the creation of practical resources for families. Their Watch Their Hearts initiative, run in collaboration with the New Mexico Department of Health Newborn Screening Department, focuses on raising CHD awareness among expecting and new parents while equipping providers with current education and resources.

Timely diagnosis of CHD among children and young adults is the key to better physical and mental health outcomes. Hole in the Heart exists so that no other family has to walk that path alone.