The purpose of this book is to inspire and educate others about life with congenital heart defects. Some heart defects were considered a death sentence just a couple of decades ago. Now there is treatment. Now there is hope.

What kind of life can a child with a severe, congenital heart defect hope to lead? Can that child experience normal childhood events? Will the child be able to run a race? play in a band? celebrate religious ceremonies? go to college? have a baby?

At two months of age my son, Alexander, was diagnosed with a severe, congenital heart defect known as hypoplastic left heart syndrome (HLHS). He is four years old now and has survived two open-heart surgeries. When he was first diagnosed I asked myself the questions above. I wanted reassurance. I wanted to know my son would grow up. I wanted him to have a normal life. I wanted him to live.

Like many other parents of children with congenital birth defects, I was worried about my son’s quality of life. What kind of life would he lead? Would he hate his father and me for putting him through a number of open-heart surgeries? Would he be angry if he could not participate in activities which his older brother never thought about twice? Would he be in and out of hospitals for most of his life? I wanted to know. I wanted some kind of preparation.

Over the course of several years I had come to know many parents of children with congenital heart defects (CHDs) and considered some of them friends even though we had never met face-to-face. I “met” some people through the Internet when they found out they were pregnant with their HLHS baby and corresponded by email with them through their pregnancy and their child’s open-heart surgeries. We became very close because of our special bond. We prayed, cried and rejoiced in each child’s triumph and as each of our babies beat the odds. And, yes, sometimes we grieved for and with each other when one of our angels didn’t make it. I discovered that it did not matter which country we lived in, how old we were, how much money we had in the bank—all of us had the same concerns, the same dreams and the same hopes and fears.

We all wanted the same thing—reassurance that our children could lead a normal life. Parents asked me questions about what kind of future their child might have. In March of 1997, I realized I knew many wonderful stories about inspirational children and mothers. When people called or wrote to me about their situation, I could share stories about Alexander or other children and parents I had come to know. I felt rich with information and empowered by the beautiful stories I knew were told from the heart. I was finally beginning to have some answers to some of those questions.