| Hypoplastic Left Heart Syndrome: A Handbook for Parents |
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Foreword
by: John Calhoon, M.D. Associate Professor and Head, Thoracic and Cardiovascular Surgery UT Health Science Center, San Antonio, Texas Parents of children born with hypoplastic left heart syndrome are immediately overwhelmed by the severity and the rapidity with which this disease attempts to take their child from them. Mrs. Jaworski has done all a great service by compiling this textbook. She has taken the time to dissect a very complex and confusing cardiac defect and to place it into words and drawings that most can understand. Everyone brings a different perspective to this disease, physicians, parents, lay people, and various clergy. I feel it important to mention my own perspectives. Throughout the text I cannot agree more with Mrs. Jaworski in terms of the basic terminology, the diagrams, and the explanations of the various options available to the parents of the child afflicted with this illness. However, I continue to feel that the option of doing nothing is a real one and that no parent should feel that they must undertake the surgical intervention for children afflicted with this disease. It is a disease expensive to treat in terms of emotional turmoil, time requirements of all involved, and physical considerations. I have seen a number of wonderful families essentially destroyed by this illness. Mrs. Jaworski has seen and described some of our best outcomes, but has not had the experience of some that weren’t so successful. My suggestion is that any parent that has a child afflicted with this disease would read this book, try and comprehend all that is within it as quickly as possible, and be prepared when they meet their physician to ask appropriate questions and take time with their spouse to discuss this illness and arrive at a treatment decision that is best for them. At that point, I would encourage the parents of the child to invite all those that might feel they have some reason to be involved with their decision to meet with the physician in a group session before a final treatment plan is decided upon. I am convinced that the treatment plan is the decision of the parents, but I am also convinced that the parents deserve the understanding and support of their loved ones, their parents, their aunts, their uncles, their brothers and their sisters as this disease and illness affects extended families in varying ways. Finally, I would like to applaud Mr. and Mrs. Jaworski for their undying and unwavering love for little Alexander and their support of he and Joey throughout Alexander’s trials. Certainly this text will go a long way toward helping other parents make better and more informed decisions about their newborn’s care. |
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