Each year an estimated 150,000 babies are born with birth defects in the United States. According to a 1998 report of the National Center for Health Statistics, one in five infant deaths is due to birth defects, making them the leading cause of infant mortality. Cleft lip with or without cleft palate and isolated cleft palate, collectively termed oral clefts, are the second most common birth defects among newborns. It is estimated that approximately 1 out of every 1000 newborns has an oral cleft, a figure that is higher in certain ethnic groups. From these statistics it may be concluded that 4000 babiesare born each year with an oral cleft in the United States. At a lifetime cost of $100,000 per case (according to the National Institute of Dental and Craniofacial Research in 1998), the expense resulting from this disorder is close to half a billion dollars per annual cohort of such children.
Among several objectives of the series Healthy People 2010, released by the U.S. Department of Health and Human Services in January 2000, are efforts to reduce rates of birth defects and to increase the quality and years of healthy life in the population. An understanding of the genetic and environmental factors that increase susceptibility to oral clefts is vital to their diagnosis, treatment, and, eventually, prevention. This book, therefore, is intended to provide graduate students, practitioners, and researchers with information to help them fulfill the goals of Healthy People 2010. The book, however, was organized with a wider readership in mind. Many of the chapters will be of interest to parents, siblings, and individuals with oral clefts.
The following chapters cover a broad range of theoretical, experimental, and clinical topics and are written by experts in the fields of craniofacial development, biomedical sciences, genetics, epidemiology, and public health. The format is that of a state-of-the-art reference text for a wide readership seeking in-depth information on oral clefts. The text is divided into three sections, Basic Principles, Treatment, and Public Health Issues, plus one appendix and a glossary.
The first section has four parts. Part I presents overarching principles of facial development, from molecules to tissues and organs (Chapters 1,2,3). These topics will be of special interest to basic scientists. Part II, Chapters 4,5,6,7,8 is devoted to diagnostic and morphological issues. There is still considerable debate on how to classify syndromes associated with clefts. Thus, this part will be appealing to both clinicians and researchers. Part III includes methods in oral cleft epidemiology (Chapters 9 and 10), the development and use of birth-defect surveillance systems (Chapter 11), measures of occurrence from international epidemiological studies (Chapter 12), theories on environmental exposures that may increase or decrease the risk of oral clef ting (Chapters 13 and 14), and experimental (animal) models for the study of oral clefts (Chapter 15). Part IV, Chapters 16,17,18,19,20,21,22,23 covers the genetic epidemiology of oral clefts. This part, of special interest to basic researchers and health-policy analysts, describes methodological issues and recent findings. Cloning and identifying genes associated with disorders is one of the principal aims of the worldwide Human Genome Project. The consequences of these findings, however, are of importance to policy analysts and the public at large.
Section II reviews a broad set of clinical approaches to patients and families with oral clefts. Beginning with a detailed description of the craniofacial team approach (Chapter 24), it deals with pediatric and feeding issues (Chapter 25); surgery (Chapter 26); speech, language, and articulation disorders (Chapter 27); dental care and orthodontic treatment (Chapters 28 and 29); associated disorders in the ear, nose, and throat areas (Chapter 30); genetic counseling (Chapter 31); and the psychological care of children with oral clefts (Chapter 32). Due to their direct implications for treatment, this section also covers international surgical missions (Chapter 33) and evidence-based care for the individual with an oral cleft (Chapter 34).
Section III addresses emerging issues that have a direct impact on society. Chapter 35 deals with the prevention of oral clefts through multivitamin supplements. Chapter 36 describes the financial burden associated with the care of oral cleft patients, both to the family of the affected individual as well as to society. Coverage of care is discussed in Chapter 37. Parental perceptions and perspectives on having a child with a cleft and on possibilities for treatment and social interactions are the subject of Chapter 38, which includes compelling stories of parents of children with oral clefts. Numerous ethical issues involved in the care of children with craniofacial conditions are discussed in Chapter 39. “Translational” methods are presented in Chapter 40. This relatively new discipline aims at extending research findings into public health policy and action. This area is at an early stage, but as presymptomatic genetic tests become increasingly available, it is receiving much attention from the media and the public. Education of practitioners and the public is discussed in Chapter 41, and an example of international collaboration for research and treatment is presented in Chapter 42. A list of Internet resources is provided in the Appendix. Finally, a comprehensive glossary is included at the end of the volume.
Although research findings and strategies for the treatment of individuals with oral clefts will continue to evolve in the next decades, I hope that this book will be of use to all those who seek specific information in any of the areas that are covered here.
D. F. W.
Boston, Massachusetts