Your child’s heart is the first organ to form, being completely formed by the end of the second month of pregnancy. Hearing it beat for the first time is a significant milestone—your child is alive and growing. But besides the importance of the heart as an organ that keeps us alive, in our culture the heart has come to mean much more. It symbolizes the love we feel for one another and for our children.
A Problem with the Heart
Because the heart is so significant to us, it is all the more disturbing when it has a problem, especially when it happens to a child. Most people don’t associate heart disease with children, and no one expects it to happen to their child.
Unfortunately, it is fairly common for children to have a heart problem. Approximately 1 out of every 110 children is born with a birth defect of the heart - also known as congenital heart disease (CHD) - making it the most common birth defect. CHD can be diagnosed before or after your baby is born, during childhood or, in some cases, not until adulthood. In mild cases, it may never be diagnosed. Children can also be born without a birth defect but acquire a heart condition as they are growing up.
Odds Are in Your Child’s Favor
Whether you are the parent of a child with heart disease or an adult survivor of congenital heart disease, don’t give up hope. Some 90 percent of children born with a heart defect survive to adulthood. According to the American Heart Association, from 1994 to 2004, death rates for congenital heart defects declined more than 30 percent. Due to increasing successes of treatment and surgery, there are now more adults than ever living with congenital heart disease. And most children with a heart defect will live a full life with little or no limitation to what they can do.
Understanding Heart Disease in Children
If your child is born with a heart defect or develops a heart problem during childhood, you will no doubt have many questions. As you seek answers, on this website, from your doctor and from other sources, keep in mind that new treatments and technologies continue to improve the outcomes for children.
Hope and Help
Having a child with a birth defect can cause people to avoid the individuals who could help them the most—family, friends, support groups, and other resources in the community. But remember, you don’t have to go through it alone. Others have asked the same questions: Will my child be okay? Can she lead a normal life?
Read Personal Stories from Patients and Families to meet other families that have struggled with these same questions and explore the topics listed below. And, don’t hesitate to talk with your physicians and other caregivers. If necessary, don’t be afraid to ask them to explain things to you in a way that you can understand so you know what is going on and the plan for your care in the future.