Welcome to Baby Hearts Press!

Baby Hearts Press is an independent publishing company that has been providing books and resources for the congenital heart defect (CHD) community since 1997. Owner and founder, Anna Jaworski, is the mother of a young adult with the complex congenital heart defect known as hypoplastic left heart syndrome (HLHS). She is the author of two books, editor of two books, a contributor to a number of books as well as a public speaker and internet talk radio show host of Heart to Heart with Anna.




Hypoplastic Left Heart Syndrome: A Handbook for Parents

Hypoplastic Left Heart Syndrome

Edited by: Anna Marie Jaworski

Illustrated by: Frank Jaworski, R.N.

Foreword by: John Calhoon, M.D.



Baby Hearts Press

ISBN: 0-9652508-6-5



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Table of Contents

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i. Preface by Anna Jaworski
ii. Warning / Disclaimer
iii. Acknowledgements
iv. Foreword by John Calhoon, M.D.
I. Alexander's Story 15
II. Matthew's Story 21
III. Hypoplastic Left Heart Syndrome (HLHS) 25
IV. Normal Anatomy and Anatomical Defects 33
V. Testing and Diagnostic Equipment 41
VI. Surgical Procedures 45
VII. Surviving the Hospital Stay 51
VIII. Typical Post-Operative Schedule and Common Complications 55
IX. Between Surgeries 61
X. Planning for the Future 69
XI. Medications and Drugs 73
XII. Nutrition and Feeding 77
XIII. Physicians and Other Personnel 79
XIV. Social Services 81
XV. The Cycle of Life 87
XVI. Congenital Hearts: A Support Group for Parents 91
XVII. Appendix A: A Parents' Guide to Infant CPR 97
Appendix B: Parents' Guide to Unconscious Infant with Airway Obstruction 99
Appendix C: Glossary 101
XVII. References 103
XIX. Index 107





DISCLAIMER:

This book is designed to provide supplementary information to parents. This information is not intended as a substitute for medical advice. Parents should consult with medical personnel whenever they feel compelled, regardless of what is written in this book.

Much of this book is the author's opinion and should be read with that in mind. Surgeries, theories, and information are constantly changing. This book is not meant as an authoritative text on Hypoplastic Left Heart Syndrome, but, simply as a starting place for parents. Parents are encouraged to visit their local university library to use Medline or some other computerized search of current medical journals for more in-depth discussions on any of the topics addressed here.

Every effort has been made to make this handbook as accurate as possible; however, there may be mistakes both typographical and in content. Consequently, this book should only be used as a general guide and not as an ultimate source of medical information on Hypoplastic Left Heart Syndrome.

The purpose of this book is to inform parents of basic information with regard to Hypoplastic Left Heart Syndrome. The author and Baby Hearts Press shall have neither liability nor responsibility to any person or entity with respect to any loss or damage caused, or alleged to be caused, directly or indirectly by the information contained in this book. If you do not wish to be bound by the above, you may return this book to the publisher for a full refund.




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should not be substituted for professional care or attention by a qualified practitioner. Always check with a medical professional if you have any questions or concerns about a specific condition and always check with your doctor before making any changes in care based on what you might read at this site or elsewhere. You can contact

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