Finding out your child has congenital or acquired heart disease is extremely stressful. A new diagnosis brings many questions and feelings of uncertainty. You are not alone. The Circle of Hearts Family Support Network is a non-profit children's charity made up of parents and caregivers who have children with congenital or acquired heart defects. The Circle of Hearts represents all pediatric heart patients and families of the Variety Children's Heart Centre, who span over Manitoba, Nunavut, parts of NW Ontario and Eastern Saskatchewan.
We believe that it is of great benefit to communicate with families who have gone through similar situations. It can help prepare your family for some of the situations and feelings all of you experience. We aim to provide emotional and educational support to those who are in need, as well as a means of networking among families whose children are affected by heart disease.
Along with providing such support to our families, the Circle of Hearts also provides fun family activities throughout the year to show our heart children that there is more to the Variety Children's Heart Centre than being a cardiac patient.
What is a congenital heart defect?
A congenital heart defect (CHD) is an anomaly of the heart that is present at birth, involving one or more portions of the heart to develop abnormally. There are many different types of congenital heart defects, and they range from simple defects such as a tiny hole that will never require treatment, to complex defects with severe, life-threatening symptoms that affect how blood and nutrients are pumped throughout the body. Some babies may be diagnosed before or at birth; some not until days, weeks, months, or even years later. Undiagnosed CHDs and childhood onset heart disease cause many cases of sudden cardiac death in young athletes.
Congenital heart defects are the world's most common type of birth defect; about one in every 100 babies are affected, representing 1% of births (Health Canada, 2002). In Canada, there are almost 100,000 adults who, as children, had surgery to correct congenital heart defects (Marelli et al, 2006). Over the past few decades, diagnosis and treatment of heart defects has improved significantly. With modern treatment, more than 90% of children survive well into adulthood.