Since 2004, Mended Little Hearts has provided families and caregivers of children with heart defects and heart disease an outlet through which they can find answers, education, resources and access to local-based peer-to-peer support – building hope for the future. With Mended Little Hearts, children with congenital heart defects (CHD) and their families find strength and understanding from those who share the same experience.
Directly touching the lives of more than 5,000 CHD families in 2010, and indirectly touching thousands more, Mended Little Hearts currently offers several programs and services to help families including:
Nothing can replace in-person connections with others facing a similar journey. Mended Little Hearts group meetings provide invaluable peer-to-peer interaction and a forum for families to make personal connections with each other and the medical community. Children with heart defects can meet others like them, with similar scars, and know that they are not alone. Parents can meet other parents and caregivers who have similar joys, fears, concerns and hopes.
Mended Little Hearts trained and accredited visitors visit with families who have children with congenital heart defects in hospitals, by phone and online. The volunteers are family members who have experienced congenital heart defects firsthand. Visits provide support, information and outreach uniquely delivered by a parent who has experienced open-heart surgery or other heart procedures with their own child.
Most people are unaware that congenital heart defects are the most common birth defect in the United States. Mended Little Hearts works to promote education and awareness to those who may be impacted by congenital heart defects so they are prepared if their child is diagnosed. The instruction includes signs and symptoms, which has the potential to save lives when parents are able to recognize symptoms in time to help their child. Mended Little Hearts also creates awareness of the need to support congenital heart defect research so more children can live healthy lives and become healthy adults.
Mended Little Hearts groups help to educate people in the communities. Cardiovascular professionals and other professionals in the community provide helpful information at Mended Little Hearts group meetings, through workshops, seminars and at health fairs. Families receive essential information about treatment options, research innovations, social support resources, and other topics that make navigating the diagnosis of heart defects less frightening.
Mended Little Hearts members interact with families through Internet and phone outreach as well as by providing Web resources. Hospital stays and seclusion in the home can leave families who have children with congenital heart defects feeling helpless and alone. Through Mended Little Hearts, caregivers have access to ongoing personal support from people who understand.
Mended Little Hearts advocates on issues that help families with CHD, such as newborn screening and advances in research and improved surveillance of those impacted.