Today, about 85% of babies with congenital heart disease will grow into adulthood. In 2000, an estimated 60% of people living with congenital heart disease were over 20. Happily, this number continues to grow as treatment improves.
Because it is only fairly recently that children with cardiac problems have started to live well into adulthood, there is still limited information on how CHD and other factors might affect development, both physically and mentally. It is clear, however, that the congenital heart disease and/or the attempts to correct it can affect parts of the body beyond the heart. Now that the outlook is more positive, more studies are being done on these patients, providing data to inform children who are newly diagnosed, and their parents, about what the future holds.
Each age and stage of life also brings a different set of challenges. It might seem that as soon as your family has found ways to negotiate one stage of development, the next stage has arrived. Parenting an infant or toddler with a heart condition can be very different from parenting a school-aged child. Likewise, being a teenager with a heart condition is different from being 9 or 10 years old. As teenagers reach adulthood, they are faced with new issues, both physical and social, that further affect their care.
Both your family and the health care team can help smooth your child’s road to adulthood by understanding your child’s concerns, problem-solving with her to address these concerns, and helping her develop coping strategies that she can take with her into her adult years. In this section of the site, you will learn about the issues involved at different ages.