Living with Spina Bifida: A Guide for Families and Professionals

Living with Spina Bifida: A Guide for Families and Professionals

by Adrian Sandler

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Product Details

ISBN-13: 9780807855478
Publisher: The University of North Carolina Press
Publication date: 03/15/2004
Edition description: Updated Edition
Pages: 296
Sales rank: 851,772
Product dimensions: 6.12(w) x 9.25(h) x 0.80(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

Prefacexiii
Acknowledgmentsxix
Glossaryxxi
Chapter 1.A Holistic Overview of Spina Bifida1
A Brief Clinical Description1
A Developmental Perspective2
Impairments, Disabilities, and Handicaps4
The Story of a Child6
An Adult's Story9
Chapter 2.Neural Tube Defects11
The Embryology of Neural Tube Defects11
The Anatomy of Spina Bifida14
Spina Bifida Occulta14
Open Spina Bifida15
Anencephaly17
Cranium Bifidum (Encephalocele)17
Neurologic Impairments in Spina Bifida17
Primary Impairments18
Secondary Impairments24
Chapter 3.Epidemiology of Spina Bifida27
The Incidence of Spina Bifida27
Folic Acid and the Role of Nutritional Deficiencies29
Is Prevention Possible?32
The Role of Genetics34
Other Clues and Possibilities35
Prenatal Screening for Neural Tube Defects36
The Future of In Utero Surgery39
Chapter 4.Pregnancy and Childbirth41
Preparing for Arrival42
Things to Do in Pregnancy43
Delivery45
Information Gathering46
Making the Right Choice for Health Care47
Partnerships with Professionals48
Parent-to-Parent49
Chapter 5.The Newborn Baby51
Developmental Issues51
Observing Your Baby's Development51
Habilitation Issues54
Feeding and Feeding Difficulties54
Going Home56
Thinking about the Future57
Medical Issues58
Closure of Open Myelomeningoceles58
Hydrocephalus60
Shunt Procedures64
Chiari Malformation67
Ventriculitis70
Urodynamics and the "Hostile Bladder"71
Vesico-Ureteral Reflux73
Ethical Issues74
Parent-to-Parent75
Chapter 6.Infants and Toddlers77
Developmental Issues77
Progressions and Expectations77
Exploration and Experience81
The Value of Early Intervention82
Habilitation Issues84
Mobility84
Toileting100
Nutrition and Prevention of Obesity104
Medical Issues106
The Unstable Hip106
Shunt Function and Malfunction109
Chiari Malformation111
Failure to Thrive113
Strabismus113
Parent-to-Parent114
Chapter 7.Preschoolers117
Developmental Issues117
Progressions and Expectations117
The Growth of Imagination119
A Developing Sense of Self120
Introduction to the Social World120
Boys and Girls: The Emergence of Sexual Identity121
Habilitation Issues121
Dressing121
Other Activities of Daily Living124
Wheelchairs, Transfers, and Independence125
Promoting Ambulation129
Fine-Motor Function129
Visual-Perceptual Function131
Medical Issues133
Knees and Ankles133
Foot Problems136
Warning: Allergic to Latex!138
Emotional Issues140
Preparing Your Child for Hospitalization140
Parent-to-Parent142
Chapter 8.The School-Age Child145
Developmental Issues146
Progressions and Expectations146
Learning Abilities and Disabilities149
Common Learning Characteristics151
Attention Deficit Disorder154
Habilitation Issues157
Gait Analysis157
Physical Therapy and Adaptive PE158
A Word about Independence and Continence159
Clean Intermittent Catheterization159
CIC Procedure161
Pharmacological Management of Incontinence162
How Dry Is "Dry"?164
Surgical Management of Incontinence166
Teaching Self-Catheterization166
Bladder Stimulation168
Management of the Neurogenic Bowel168
Medical Issues170
Growth and Growth Problems170
Precocious Puberty171
Nutrition and Prevention of Obesity173
Bacteriuria and Urinary Tract Infection175
Tethering, Detethering, and Retethering177
Scoliosis and Its Management180
Seizures182
Emotional Issues184
Stress, Coping, and Humor184
Parent-to-Parent185
Chapter 9.The Adolescent and Young Adult187
Developmental Issues188
Progressions and Expectations188
Sexuality191
Habilitation Issues193
Mobility193
Accessibility194
Wheelchair Maintenance194
Driving and Transportation195
Enhancing Self-Awareness and Self-Reliance195
Independent Living Skills Programs196
Medical Issues197
Transition to Adult Health Care Services197
Weight Control and Aerobic Exercise199
Prevention of Osteoporosis200
Shunt Problems and Chiari Symptoms200
Spinal Cord Problems202
Bladder or Kidney Stones202
Hypertension and Renal Insufficiency203
Skin Injury and Pressure Sores204
Emotional Issues204
Compliance: Whose Problem Is It Anyway?204
Adjustment Problems: Confronting Disability205
Learned Helplessness206
Depression206
Parent-to-Parent206
Chapter 10.Focus on the Family209
Family-Centered Care209
The Three R's: Roles, Relationships, and Responsibilities210
Mothers and Fathers: Parental Advocacy213
Husbands and Wives215
Brothers and Sisters215
Grandparents and the Extended Family216
Culture and Ethnicity217
Lessons in Resilience: Families Bouncing Back217
Money Matters: Benefits, Taxes, and Estate Planning218
Social Security Benefits218
Work Incentive Programs219
Income Tax219
Health Insurance, Health Care Reform, and the Family221
Chapter 11.Focus on Education and Work223
Public Law 99-457 and Early Intervention224
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 Advocacy228
Education Management Strategies229
Transition Planning: High School and Beyond229
Higher Education and Adult Training234
Making It in the World of Work235
The Americans with Disabilities Act (ADA)236
Friends and Friendships238
Leisure Skills and Recreational Opportunities238
AppendixDirectory of Spina Bifida Associations243
References and Suggestions for Further Reading253
Index261

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

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Living with Spina Bifida: A Guide for Families and Professionals 5 out of 5 based on 0 ratings. 3 reviews.
Anonymous More than 1 year ago
He ran in.
Anonymous More than 1 year ago
He padded in
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