Conquering CHD

Learning your child has congenital heart disease can be overwhelming. Many children with congenital heart disease need life saving surgery or intervention in the first few weeks or months of their life. This leads to important medical decisions about the care of your child, often in a short amount of time and under stress. However, the ability to get important information about where your child will get their treatment is limited. The organization is working to address this issue on many levels. We empower patients and families directlythrough the use of the guided questions tool. Given to families at the time of diagnosis, this list of questions offers support and confidence when talking to doctors, surgeons and the care team about quality, what to expect when in the hospital, and beyond. Although widely distributed through our care packages, our website and social media, we are completing a multicenter quality improvement project with the country's top heart hospitals, to document that we are achieving our desired goals with this tool. More broadly, we are influencing national policy and culture surrounding public reporting of pediatric and congenital heart disease outcomes. We are achieving this through a series of stakeholder summits, faculty presentations at national conferences, and building relationships with partner organizations. Results include modifications to national ranking systems (u.s. news and world report) and the increase in respect for and utilization of the parent voice within the medical community. We are presently working with an extensive list of stakeholders toward the development of the organization website to include centralized congenital heart outcome data reporting and information to support interpretation for patients, families and the providers who care for them.

The organization continues to grow our direct impact through the implementation of a state chapter infrastructure. While independent entities, our state chapters are provided with administrative and leadership support, branded resources, core care package materials andgroup exemption through the national organization.

In 2022, Conquering CHD developed mental health matters, a program designed to address the invisible impacts of CHD on mental health. Congenital heart disease is not just about the heart. CHD has a real impact on all aspects of life and health. Mental health issues are extremely common and can be one of the most difficult things patients and families manage, remaining underrecognized and undertreated. Mental health matters provides education, resources and support for all patients and their families while advocating for inclusion of mental health in CHD care and research programs. We've compiled more than 30 resources and tools from leading experts in the field to help families learn more about mental health and how they can seek the support they need.