Hypoplastic Left Heart Syndrome:Preface

Hypoplastic Left Heart Syndrome: A Handbook for Parents

Preface
by: Anna Marie Jaworski

This book is being written by a parent for other parents of children with Hypoplastic Left Heart Syndrome (HLHS). Unlike some congenital heart problems, HLHS is very hard to understand because it is different for each child affected. There are many tests, medical personnel, and words and phrases that parents will need to become familiar with in order to be an effective advocate for his or her child.

I was overwhelmed when my son went into the hospital and was diagnosed with HLHS. I was in shock and denial. It actually took many months before I was ready to read about and try to more fully understand this problem. To my dismay, even after requesting information from my son’s doctors, I was told very little. That was when I decided to search for the information myself.

After talking to other parents of HLHS children I realized I was not alone. Most parents felt they didn’t understand as much as they wanted to. Most felt at a loss as to how to even get the information they wanted or needed. Parents told me that they didn’t know where to start or what questions to ask.

I decided to write this book with all of that in mind. This book is based on my experiences from living with a child with HLHS and from talking with other parents of children with HLHS. You’ll notice that the sections are broad categories. Some of the text is written in question and answer form. I’ve provided an index in the back so you can look up key words. This book is not intended as a substitute for medical advice from doctors or nurses. It is my hope that this book can supplement information you already have, explain things which were unclear to you and perhaps provide you with non-medical information medical personnel may not have discussed with you such as information on grieving and siblings.

Where possible I have included diagrams, but remember that a picture is only two-dimensional. The heart is three-dimensional. It is a very complex organ. Even after months of research I still don’t understand it completely. I’m not sure that it is important for parents to understand everything. We do need to understand the complexity of our children’s problems. If we have a general idea of what is wrong with our children’s hearts it will be easier for us to understand how the surgeon will fix it. It will also be easier to understand any complications occurring during or after the surgery.

I decided to start a support group for parents of children with congenital heart defects. A list of our names, addresses and phone numbers is in the back of this book. Please feel free to call on any of us for support. We will be happy to talk to you and share our experiences and feelings. Welcome to our support group. After talking to us, even for a short time, you will likely feel a bond and hopefully establish some strong friendships. Nobody can understand what you are going through or have been through like we can.

I would love suggestions on how to improve this book. If you have questions you did not find in this book, please jot them down and send them to me. These questions will be a great help to me in revising this book and to other parents who have the same questions you do.

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