It's American Heart Month -- A Look at Congenital Heart Defect (CHD)
Each year in the United States, about 40,000 (1 in 110) babies are diagnosed with a congenital heart defect (CHD), making it the most common birth defect in the nation. Nearly 25 percent of those families also learn that their child needs heart surgery or another heart procedure to survive—some needing multiple surgeries or even a heart transplant. Kids with CHD are not only affected at birth, but have a lifelong chronic disease requiring specialized care.
Families who learn that their child has a CHD are thrust in a world they are often ill-prepared to manage. Many emotions come with this diagnosis including grief, fear, anger and confusion—they also often feel alone. Moms, dads, grandparents, aunts, uncles and other family members find themselves searching for answers—for information about the child’s heart defect or heart disease, about why this happened to their child, and about how to care for these special children.
In addition to dealing with a child’s heart defect itself, families must tackle other issues that may result from a child’s CHD. These include neurodevelopmental issues, like developmental disabilities and psycho-social issues, feeding issues, economic impact issues; as well as emotional impact on siblings and other family members, just to name a few. Parents and caregivers find themselves navigating a variety of medical specialists, health care professionals, early intervention service providers, educational services providers, and other service providers who help manage their child’s condition.
Often, an important part of caring for families with children who have CHD is connecting them with peer-to-peer support. While good medical care is vital, the vast majority of care occurs outside of a medical setting. Even while children are in the hospital, families can benefit from tips and tools to help them care for their child in the hospital. People who have experienced caring for a child with CHD have unique insight about many of the things newly-diagnosed families may experience.
Families receiving peer-to-peer support have a more positive outlook and feel better able to cope. Families getting support learn that they are not alone and gain access to needed resources to help them through a hospital stay with their child and to care for that child once they are home. When parents receive educational materials about caring for their child written collectively by medical professionals and parents with kids who have CHD, they have access to tools, tips and information they need to help them through their family’s journey with CHD.
Family-centered care is also important for families with children in the hospital. When health care professionals work in collaboration with parents, caregivers and families, there is a positive impact on care, treatment and quality of life.
Jodi Lemacks is the National Program Director for Mended Little Hearts, the nation’s largest support organization for families with kids who have congenital heart disease