Welcome To Our Book Page

 I wanted to put this page together in order to share some of the reading material available for families of children born with a congenital heart disease especially those with Hypoplastic Left Heart Syndrome.

If you have any suggestions for this page then please email me.

For more information on the following books please visit Baby Hearts Press at their website by clicking on the above logo.

The Heart of a Mother

This book is a must read for anyone involved with families living with CHDs. Discover how women feel from the point of discovery of the CHD, through the surgeries often needed, to how they find and give support to others and their family and on to their hopes for the future. Have you ever wondered how a girl born with a CHD feels about having a child of her own? If children with CHDs can lead a normal life? How having a child with a CHD will change your life? Wonder no longer. This book answers those questions and more.

Hypoplastic Left Heart Syndrome:  A Handbook for Parents

Baby Hearts Press' first and best known book is Hypoplastic Left Heart Syndrome:  A Handbook for Parents.  This is the book that Anna  wished would have been available when Alexander was diagnosed with HLHS.  The book opens with Anna's personal experience when Alex had the Norwood Operation.  The second chapter is Teresa Sorlie's experience when her son had a heart transplant.

This is a good resource for parents to use in addition to their paediatric cardiologist when dealing with a child diagnosed with HLHS. There are basic explanations and diagrams of normal heart development and functions, along with explanations and diagrams of defects that can be included in a diagnosis of HLHS.

My Brother Needs An Operation

Baby Hearts Press' first children's book is My Brother Needs an Operation. This book is the story of how Joey's life was affected when his little brother, Alex, had to go to the hospital. The story shows the different ways Alex's hospitalization affected Joey. What makes this book unique is the Hospital Diary and Activity section for the unhospitalized sibling. There is room for the child to add photographs, draw pictures, write feelings, etc. This book, when completed, will be a memoir of your family's experience of having a hospitalized and unhospitalized child.

For more information and other books available please visit Centering by clicking on the logo above.

Loving and Letting Go

For parents who decide to turn away from aggressive medical intervention for their critically ill newborns.

Review:  My husband and I had a son in July 1997 that was diagnosed with Hypoplastic Left Heart Syndrome when he was 2 days old. After being given very grim results of treatment options, we chose Comfort Care, i.e. do nothing. We took him home, and he died in my arms when he was 8 days old. I wish I had this book in 1997 to help me with such guilt and grief then. It has helped me to read it now though. Thank you.
written by Kari Barr