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Life with HLHS

Living and Growing up with Hypoplastic Left Heart Syndrome

This website is dedicated to my wonderful daughter Kacy, I love you.

I wanted to have a website for both Kacy and myself, to express our thoughts, our hopes and our dreams, and anything else that will help us or others come to terms with living with a heart defect known as Hypoplastic Left Heart Syndrome(HLHS)

Ever since Kacy was born with HLHS, I found the need and desire to read and communicate with the parents of other children who were born with a heart defect, and was especially interested in those dealing with the same defect as Kacy. Hypoplastic Left Heart Syndrome is one of the most serious of all heart defects and the future of the children living with this defect is so very uncertain. When your child is born or to be born with this specific defect, most doctors give you three options to determine the fate of your child: Compassionate Care, 3 stage palliative open heart surgeries, or a heart transplant. I have learned by reading others stories, that no one option is the right option or the better option to choose. What matters is what choice is best for you and your family, for what you believe, for what you think you are able to endure. For Kacy, our choice was that of the 3 stage open heart surgeries. Please feel free to read about our story, from the decision, to the way we live life everyday, having a child with half a heart.