Aortic Valve Stenosis…Atrial Septal Defect…Complete Atrioventricular Canal Defect…d-Transposition of the great Arteries…As a university educated adult, I struggle to pronounce these names and sadly, to many parents these words roll off their tongue like they were reciting the alphabet. These are just a few of the many known Congenital Heart Defects babies are born with every year, making CHD the most common type of birth defect in children.
February is Heart Month and for the next week we try to bring awareness about congenital heart defects (CHD). This has become a personal project for me as I meet more and more parents through my work whose children have undergone at least one open heart surgery to keep them alive. Their stories are so detailed and laced with emotion and pain. To those of us, who’s children have never had such serious issues, we have no idea the daily struggles, the odds to beat, the anxiety of waiting while your baby is undegoing open heart surgery, and to many, the gut wrenching pain of losing their child to CHD.
Briefly, CHD is a problem with the structure of the heart at birth. This can involve the walls of the heart, the valves, as well as any problem with the arteries and veins near the heart. Defects range from simple (which might cause minimal problems) to complex which cause life-threatening complications. These issues can disrupt the normal flow of blood through the heart.
About 1 in 80-100 Canadian babies are born each year with CHD. Almost one quarter of these babies require surgery before 1 month old and 40% of these children are under one year when undergoing major cardiac surgery to keep them alive.
The heart is formed by 8 weeks into a pregnancy and many CHD’s can occur during those first few weeks of development. Some heart problems can be detected during ultrasound scans but often a problem isn’t diagnosed until after a baby is born.
Advances in research and life saving procedures have allowed a very high percentage of children to grow into adulthood whereas years ago this wasn’t the case. It is estimated that 100,000 adults in Canada live with CHD and many have to continue to undergo surgeries or procedures as they age.
For the next few days I will be highlighting some awesome heart warriors living with CHD. I brought them into my studio to photograph them, their scars and try to capture their amazing strength. As I listened to the detailed stories from the parents, I was in awe of their fight for their child, their strength as a family, their beliefs and the knowledge we must continue to raise awareness and funds for research of this birth defect. I can only speak with researched facts and figures and take photos. I cannot speak about what it’s like to live with a child with CHD so please l read about these parent’s gut wrenching stories.
NEXT: Please join me tomorrow as I introduce you to a little sweetheart named Penny who’s smile and energy could melt any heart.