Living with Spina Bifida: A Guide for Families and Professionals

by Adrian Sandler

Overview

It is the most common complex birth defect. Spina bifida affects approximately one out of every 1,000 children born in the United States. In this comprehensive guide, Dr. Adrian Sandler offers a wealth of useful information on the medical, developmental, and psychological aspects of this condition.

Accurate, accessible, and up-to-date, Living with Spina Bifida is written especially for families and professionals who care for children, adolescents, and adults with spina bifida. This edition contains a new preface by the author, addressing recent developments in research and treatment, as well as an updated list of spina bifida associations.

Product Details

ISBN-13:	9780807855478
Publisher:	The University of North Carolina Press
Publication date:	03/15/2004
Edition description:	Updated Edition, with a new preface by the author
Pages:	296
Product dimensions:	6.12(w) x 9.25(h) x 0.67(d)

About the Author

Adrian Sandler, M.D., is medical director of the Olson Huff Center at Mission Children's Hospital in Asheville, North Carolina.

Table of Contents

	Preface	xiii
	Acknowledgments	xix
	Glossary	xxi
Chapter 1.	A Holistic Overview of Spina Bifida	1
	A Brief Clinical Description	1
	A Developmental Perspective	2
	Impairments, Disabilities, and Handicaps	4
	The Story of a Child	6
	An Adult's Story	9
Chapter 2.	Neural Tube Defects	11
	The Embryology of Neural Tube Defects	11
	The Anatomy of Spina Bifida	14
	Spina Bifida Occulta	14
	Open Spina Bifida	15
	Anencephaly	17
	Cranium Bifidum (Encephalocele)	17
	Neurologic Impairments in Spina Bifida	17
	Primary Impairments	18
	Secondary Impairments	24
Chapter 3.	Epidemiology of Spina Bifida	27
	The Incidence of Spina Bifida	27
	Folic Acid and the Role of Nutritional Deficiencies	29
	Is Prevention Possible?	32
	The Role of Genetics	34
	Other Clues and Possibilities	35
	Prenatal Screening for Neural Tube Defects	36
	The Future of In Utero Surgery	39
Chapter 4.	Pregnancy and Childbirth	41
	Preparing for Arrival	42
	Things to Do in Pregnancy	43
	Delivery	45
	Information Gathering	46
	Making the Right Choice for Health Care	47
	Partnerships with Professionals	48
	Parent-to-Parent	49
Chapter 5.	The Newborn Baby	51
	Developmental Issues	51
	Observing Your Baby's Development	51
	Habilitation Issues	54
	Feeding and Feeding Difficulties	54
	Going Home	56
	Thinking about the Future	57
	Medical Issues	58
	Closure of Open Myelomeningoceles	58
	Hydrocephalus	60
	Shunt Procedures	64
	Chiari Malformation	67
	Ventriculitis	70
	Urodynamics and the "Hostile Bladder"	71
	Vesico-Ureteral Reflux	73
	Ethical Issues	74
	Parent-to-Parent	75
Chapter 6.	Infants and Toddlers	77
	Developmental Issues	77
	Progressions and Expectations	77
	Exploration and Experience	81
	The Value of Early Intervention	82
	Habilitation Issues	84
	Mobility	84
	Toileting	100
	Nutrition and Prevention of Obesity	104
	Medical Issues	106
	The Unstable Hip	106
	Shunt Function and Malfunction	109
	Chiari Malformation	111
	Failure to Thrive	113
	Strabismus	113
	Parent-to-Parent	114
Chapter 7.	Preschoolers	117
	Developmental Issues	117
	Progressions and Expectations	117
	The Growth of Imagination	119
	A Developing Sense of Self	120
	Introduction to the Social World	120
	Boys and Girls: The Emergence of Sexual Identity	121
	Habilitation Issues	121
	Dressing	121
	Other Activities of Daily Living	124
	Wheelchairs, Transfers, and Independence	125
	Promoting Ambulation	129
	Fine-Motor Function	129
	Visual-Perceptual Function	131
	Medical Issues	133
	Knees and Ankles	133
	Foot Problems	136
	Warning: Allergic to Latex!	138
	Emotional Issues	140
	Preparing Your Child for Hospitalization	140
	Parent-to-Parent	142
Chapter 8.	The School-Age Child	145
	Developmental Issues	146
	Progressions and Expectations	146
	Learning Abilities and Disabilities	149
	Common Learning Characteristics	151
	Attention Deficit Disorder	154
	Habilitation Issues	157
	Gait Analysis	157
	Physical Therapy and Adaptive PE	158
	A Word about Independence and Continence	159
	Clean Intermittent Catheterization	159
	CIC Procedure	161
	Pharmacological Management of Incontinence	162
	How Dry Is "Dry"?	164
	Surgical Management of Incontinence	166
	Teaching Self-Catheterization	166
	Bladder Stimulation	168
	Management of the Neurogenic Bowel	168
	Medical Issues	170
	Growth and Growth Problems	170
	Precocious Puberty	171
	Nutrition and Prevention of Obesity	173
	Bacteriuria and Urinary Tract Infection	175
	Tethering, Detethering, and Retethering	177
	Scoliosis and Its Management	180
	Seizures	182
	Emotional Issues	184
	Stress, Coping, and Humor	184
	Parent-to-Parent	185
Chapter 9.	The Adolescent and Young Adult	187
	Developmental Issues	188
	Progressions and Expectations	188
	Sexuality	191
	Habilitation Issues	193
	Mobility	193
	Accessibility	194
	Wheelchair Maintenance	194
	Driving and Transportation	195
	Enhancing Self-Awareness and Self-Reliance	195
	Independent Living Skills Programs	196
	Medical Issues	197
	Transition to Adult Health Care Services	197
	Weight Control and Aerobic Exercise	199
	Prevention of Osteoporosis	200
	Shunt Problems and Chiari Symptoms	200
	Spinal Cord Problems	202
	Bladder or Kidney Stones	202
	Hypertension and Renal Insufficiency	203
	Skin Injury and Pressure Sores	204
	Emotional Issues	204
	Compliance: Whose Problem Is It Anyway?	204
	Adjustment Problems: Confronting Disability	205
	Learned Helplessness	206
	Depression	206
	Parent-to-Parent	206
Chapter 10.	Focus on the Family	209
	Family-Centered Care	209
	The Three R's: Roles, Relationships, and Responsibilities	210
	Mothers and Fathers: Parental Advocacy	213
	Husbands and Wives	215
	Brothers and Sisters	215
	Grandparents and the Extended Family	216
	Culture and Ethnicity	217
	Lessons in Resilience: Families Bouncing Back	217
	Money Matters: Benefits, Taxes, and Estate Planning	218
	Social Security Benefits	218
	Work Incentive Programs	219
	Income Tax	219
	Health Insurance, Health Care Reform, and the Family	221
Chapter 11.	Focus on Education and Work	223
	Public Law 99-457 and Early Intervention	224
	Public Laws 94-142 and 101-476 (IDEA) and the Individualized Education Plan (IEP)	225
	What's So Special about Special Education?	227
	Parent-Teacher Cooperation and School Advocacy	228
	Education Management Strategies	229
	Transition Planning: High School and Beyond	229
	Higher Education and Adult Training	234
	Making It in the World of Work	235
	The Americans with Disabilities Act (ADA)	236
	Friends and Friendships	238
	Leisure Skills and Recreational Opportunities	238
Appendix	Directory of Spina Bifida Associations	243
	References and Suggestions for Further Reading	253
	Index	261

What People are Saying About This

From the Publisher

[As] the parent of a child with spina bifida, I've never found a book that so completely addresses the multiple facets of his disability. Dr. Sandler's work is a refreshingly direct and highly readable, detailed look at a complete life-long condition."-Judy Woodruff, CNN



An authoritative summary of the current issues facing both patients and their families."-W. Jerry Oakes, M.D., Children's Hospital of Alabama

Editorial Reviews

Reviewer: Charles Kantrow, MD (Ochsner Clinic Foundation)
Description: This book describes in detail the cause and effects of spina bifida with detailed descriptions of all involved systems and associated problems. It is written for both the parents of children with spina bifida as well as those providing medical care to them. This updated edition with a new preface replaces the 1997 edition.
Purpose: The purpose is to provide an insightful view into the life of spina bifida patients and their families. This is an important subject as these children often have subspecialty care but not always primary care. Issues surrounding this condition should be understood by all involved in care of these patients. This book fills that void.
Audience: The book was written for families of patients as well as medical and other professional personnel involved in their care. It is useful both for generalists as well as specialty physicians who care for the child. The author is very credible in this area.
Features: Specific issues of the cause of spina bifida, treatment and prevention are covered. The book provides a description of issues, both medical and psychosocial, that are significant to these patients at various stages of their life from infancy to adult. This book does an excellent job of providing both information as well as perspective from both the practitioner's and patient's points of view. It is very helpful having information clearly marked for patients and for medical professionals.
Assessment: This is an excellent, readable book that provides an abundance of useful and easily understandable information about this complex issue. I will recommend it highly to my patients and residents in trying to understand spina bifida.

Doody's Review Service

[As] the parent of a child with spina bifida, I've never found a book that so completely addresses the multiple facets of his disability. Dr. Sandler's work is a refreshingly direct and highly readable, detailed look at a complete life-long condition.(Judy Woodruff, CNN)

ÝAs¨ the parent of a child with spina bifida, I've never found a book that so completely addresses the multiple facets of his disability. Dr. Sandler's work is a refreshingly direct and highly readable, detailed look at a complete life-long condition.(Judy Woodruff, CNN)

This updated edition of useful information on the medical, developmental, and psychological aspects of spina bifida contains a new preface by the author, addressing recent developments in spina bifida research and treatment, as well as an updated list of spina bifida associations.

An authoritative summary of the current issues facing both patients and their families.(W. Jerry Oakes, M.D., Children's Hospital of Alabama)

From the Publisher

[As] the parent of a child with spina bifida, I've never found a book that so completely addresses the multiple facets of his disability. Dr. Sandler's work is a refreshingly direct and highly readable, detailed look at a complete life-long condition.(Judy Woodruff, CNN)

This updated edition of useful information on the medical, developmental, and psychological aspects of spina bifida contains a new preface by the author, addressing recent developments in spina bifida research and treatment, as well as an updated list of spina bifida associations.

An authoritative summary of the current issues facing both patients and their families.(W. Jerry Oakes, M.D., Children's Hospital of Alabama)

Spina bifida ("divided spine") is a common if complex birth defect occurring during embryonic development and resulting in moderate to profound disabilities. Pediatrician Sandler has written a valuable handbook that addresses patients' biopsychosocial and developmental needs from birth through adolescence and into adulthood. Sandler's holistic approach encourages families to focus more on the child and less on the disability while providing abundant information about this condition. Parents of children with spina bifida add their personal insights in several chapters. Included are a glossary, a list of spina bifida associations, and suggested readings. Reassuring but realistic, this uniquely multidisciplinary guide is for parents, pediatricians, neurosurgeons, orthopedists, rehabilitation and physical therapists, teachers, and others involved in the care of children and adults with spina bifida. Highly recommended.Anne C. Tomlin, Auburn Memorial Hosp. Lib., N.Y.

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