“This book is sure to stand the test of time. It is an invaluable resource for families and individuals who live with the diagnosis as well as for professionals who are involved with the management of patients with spina bifida. It provides a comprehensive overview of the condition, its variations, implications, and, importantly, its effects on the individual as they age. I would have loved to have had this book when our son was born. I highly recommend it as a reference for anyone involved with the condition in any way.”
SIOBHAN FLANAGAN, MD,
Family Doctor, Ireland and mother of adult son with spina bifida.
“This is a beautifully written, comprehensive guide to myelomeningocele, the most common type of spina bifida, and its care. The content is laid out in logical, easy-to-follow chapters. The graphics are helpful to understanding the content, and the appendices provide excellent supporting information. The patient and family stories are lovely and provide hope for positive outcomes for the condition. All in all, this is a valuable resource for both families in caring for their child with spina bifida and professionals unfamiliar with the condition.”
KATHRYN SMITH, RN, MN, MS, DrPH,
Co-Director of Spina Bifida Program, Children’s Hospital of Los Angeles, Professor of Clinical Pediatrics, Keck School of Medicine of USC
“The information in this book will be a valuable resource to anyone who would like to learn about spina bifida. The summary of key points at the end of each chapter allows interested readers to learn more efficiently, and the many diagrams provide clarity. It is an important resource for families with children with the condition.”
JUDY THIBADEAU, RN, MN,
Director of Research and Services, Spina Bifida Association
“Drawing on the latest published evidence, this book empowers individuals with spina bifida and provides their families with information they can use both to understand the complexities of this condition and to reinforce skills such as self-management and self-advocacy. Importantly, it uses a lifespan approach, highlighting issues from the prenatal period to adulthood. The inclusion of
experiences of individuals and families provides a unique and important perspective. As a rehabilitation physician, I appreciate the emphasis on function and whole-body health.”
BRAD DICIANNO, MD,
Physical Medicine and Rehabilitation Doctor, Associate Medical Director, Spina Bifida Association, and Director, UPMC Adult Spina Bifida Clinic.
“In my experience, one of the biggest challenges families with a child with spina bifida face is learning the anatomy, physiology, and the vocabulary associated with the condition, the investigations, and treatments. The knowledge required extends far beyond that of most lay people. However, this comprehensive book provides the information needed with ample, clear explanations
and illustrations. It will arm families with a strong foundation from the very beginning and throughout life. The sections on life in adulthood are particularly welcome and refreshing; so many shy away from sex, fertility, and aging, despite the clear need for quality information on these important topics.”
GILLIAN YAZ, RN,
Head of Health, Shine (Spina bifida, Hydrocephalus, Networking, Equality)
“Speaking from the perspective of someone living with spina bifida, I found this book does a phenomenal job of describing all the different ways the condition can affect a person. It also caters to different audiences—people with spina bifida, parents, and those who take care of people with the condition—so every reader can get something out of this book. The pictures do a really good job of showing how some people with spina bifida may function. The suggestions of how to exercise the muscles differently, too, are very helpful for someone who may struggle to find a solid workout routine. I learned some new things about spina bifida by reading this book that I will take with me as I continue my own journey of being an adult with the condition.”
GRACIE HADLICH,
An adult living with spina bifida
“Spina Bifida is an excellent resource for individuals with spina bifida, their families, medical professionals, and educators alike. It includes information from embryology to adult transition, and the stories from those living with the condition bring the issues to a personal level.”
CHRISTOPHER J. KEENAN, DO, FAAP, FACOP, FAAPM&R,
Pediatric Physical Medicine and Rehabilitation Doctor, Children’s Hospital of Philadelphia
“This detailed book fulfills a long-time need for individuals with spina bifida and their families. It is full of well-researched information and helpful illustrations, and readers will want to refer back to it often, as people with spina bifida move through the different stages of life. It also incorporates information from the Spina Bifida Association, along with other helpful resources, making it a comprehensive, valuable tool for families seeking to advocate more effectively for their loved ones with spina bifida.”
TIMOTHY J. BREI, MD, FAAP
Medical Director, Spina Bifida Association
“In the literary genre of practical medical care, Spina Bifida is destined to become a classic. The authors provide a thoughtfully organized volume of practical guidance for today’s discerning reader, and they draw both from firsthand knowledge and numerous authoritative current sources. The writing style is easy and warm, and the use of graphics along with an international parental perspective bring the tome to life. This handsome resource belongs in the hands of every individual with spina bifida and on the shelf of every professional serving this complex and admirable population.”
JONATHAN CASTILLO, MD, MPH, FAAP,
Chief, Division of Developmental Medicine, Children’s Nebraska Hospital, Endowed Professor, Department of Pediatrics, University of Nebraska Medical Center, College of Medicine
“Exceptional spina bifida care depends on integrating high-tech medical and surgical advances with practical, everyday self-management and life-skills. Spina Bifida is a highly accessible resource that weaves together these two concepts: medical expertise with practical information for people living with the condition. The photos interspersed throughout the book of Rachelle and her daughter, Maddy, give life to the text, spanning a prenatal diagnosis to a successful transition into adulthood. The glossary demystifies medical terminology, the section on living with spina bifida offers highlights of the lived experience across the lifespan, and the illustrations throughout the text are excellent.This book is a must-read for families and health care providers alike.”
NIENKE DOSA, MD, MPH,
Professor of Pediatrics, Medical Director of Spina Bifida Clinic, Upstate Medical University, Syracuse, New York.