Living With Spina Bifida

by Sandler, Adrian

• ISBN13: 9780807855478
• ISBN10: 0807855472
• Format: Paperback
• Copyright: 2004-03-01
• Publisher: Univ of North Carolina Pr

Summary

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 Bifidais 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 spina bifida research and treatment, as well as an updated list of spina bifida associations.

Table of Contents

Preface	xiii
Acknowledgments	xix
Glossary	xxi
CHAPTER 1. A HOLISTIC OVERVIEW OF SPINA BIFIDA	1	(10)
A Brief Clinical Description	1	(1)
A Developmental Perspective	2	(2)
Impairments, Disabilities, and Handicaps	4	(2)
The Story of a Child	6	(3)
An Adult's Story	9	(2)
CHAPTER 2. NEURAL TUBE DEFECTS	11	(16)
The Embryology of Neural Tube Defects	11	(3)
The Anatomy of Spina Bifida	14	(3)
Spina Bifida Occulta	14	(1)
Open Spina Bifida	15	(2)
Anencephaly	17	(1)
Cranium Bifidum (Encephalocele)	17	(1)
Neurologic Impairments in Spina Bifida	17	(10)
Primary Impairments	18	(6)
Secondary Impairments	24	(3)
CHAPTER 3. EPIDEMIOLOGY OF SPINA BIFIDA	27	(14)
The Incidence of Spina Bifida	27	(2)
Folic Acid and the Role of Nutritional Deficiencies	29	(3)
Is Prevention Possible?	32	(2)
The Role of Genetics	34	(1)
Other Clues and Possibilities	35	(1)
Prenatal Screening for Neural Tube Defects	36	(3)
The Future of In Utero Surgery	39	(2)
CHAPTER 4. PREGNANCY AND CHILDBIRTH	41	(10)
Preparing for Arrival	42	(1)
Things to Do in Pregnancy	43	(2)
Delivery	45	(1)
Information Gathering	46	(1)
Making the Right Choice for Health Care	47	(1)
Partnerships with Professionals	48	(1)
Parent-to-Parent	49	(2)
CHAPTER 5. THE NEWBORN BABY	51	(26)
Developmental Issues	51	(3)
Observing Your Baby's Development	51	(3)
Habilitation Issues	54	(4)
Feeding and Feeding Difficulties	54	(2)
Going Home	56	(1)
Thinking about the Future	57	(1)
Medical Issues	58	(16)
Closure of Open Myelomeningoceles	58	(2)
Hydrocephalus	60	(4)
Shunt Procedures	64	(3)
Chiari Malformation	67	(3)
Ventriculitis	70	(1)
Urodynamics and the "Hostile Bladder"	71	(2)
Vesico-Ureteral Reflux	73	(1)
Ethical Issues	74	(1)
Parent-to-Parent	75	(2)
CHAPTER 6. INFANTS AND TODDLERS	77	(40)
Developmental Issues	77	(7)
Progressions and Expectations	77	(4)
Exploration and Experience	81	(1)
The Value of Early Intervention	82	(2)
Habilitation Issues	84	(22)
Mobility	84	(16)
Toileting	100	(4)
Nutrition and Prevention of Obesity	104	(2)
Medical Issues	106	(8)
The Unstable Hip	106	(3)
Shunt Function and Malfunction	109	(2)
Chiari Malformation	111	(2)
Failure to Thrive	113	(1)
Strabismus	113	(1)
Parent-to-Parent	114	(3)
CHAPTER 7. PRESCHOOLERS	117	(28)
Developmental Issues	117	(4)
Progressions and Expectations	117	(2)
The Growth of Imagination	119	(1)
A Developing Sense of Self	120	(1)
Introduction to the Social World	120	(1)
Boys and Girls: The Emergence of Sexual Identity	121	(1)
Habilitation Issues	121	(12)
Dressing	121	(3)
Other Activities of Daily Living	124	(1)
Wheelchairs, Transfers, and Independence	125	(4)
Promoting Ambulation	129	(1)
Fine-Motor Function	129	(2)
Visual-Perceptual Function	131	(2)
Medical Issues	133	(7)
Knees and Ankles	133	(3)
Foot Problems	136	(2)
Warning: Allergic to Latex!	138	(2)
Emotional Issues	140	(2)
Preparing Your Child for Hospitalization	140	(2)
Parent-to-Parent	142	(3)
CHAPTER 8. THE SCHOOL-AGE CHILD	145	(42)
Developmental Issues	146	(11)
Progressions and Expectations	146	(3)
Learning Abilities and Disabilities	149	(2)
Common Learning Characteristics	151	(3)
Attention Deficit Disorder	154	(3)
Habilitation Issues	157	(13)
Gait Analysis	157	(1)
Physical Therapy and Adaptive PE	158	(1)
A Word about Independence and Continence	159	(1)
Clean Intermittent Catheterization	159	(2)
CIC Procedure	161	(1)
Pharmacological Management of Incontinence	162	(2)
How Dry Is "Dry"?	164	(2)
Surgical Management of Incontinence	166	(1)
Teaching Self-Catheterization	166	(2)
Bladder Stimulation	168	(1)
Management of the Neurogenic Bowel	168	(2)
Medical Issues	170	(14)
Growth and Growth Problems	170	(1)
Precocious Puberty	171	(2)
Nutrition and Prevention of Obesity	173	(2)
Bacteriuria and Urinary Tract Infection	175	(2)
Tethering, Detethering, and Retethering	177	(3)
Scoliosis and Its Management	180	(2)
Seizures	182	(2)
Emotional Issues	184	(1)
Stress, Coping, and Humor	184	(1)
Parent-to-Parent	185	(2)
CHAPTER 9. THE ADOLESCENT AND YOUNG ADULT	187	(22)
Developmental Issues	188	(5)
Progressions and Expectations	188	(3)
Sexuality	191	(2)
Habilitation Issues	193	(4)
Mobility	193	(1)
Accessibility	194	(1)
Wheelchair Maintenance	194	(1)
Driving and Transportation	195	(1)
Enhancing Self-Awareness and Self-Reliance	195	(1)
Independent Living Skills Programs	196	(1)
Medical Issues	197	(7)
Transition to Adult Health Care Services	197	(2)
Weight Control and Aerobic Exercise	199	(1)
Prevention of Osteoporosis	200	(1)
Shunt Problems and Chiari Symptoms	200	(2)
Spinal Cord Problems	202	(1)
Bladder or Kidney Stones	202	(1)
Hypertension and Renal Insufficiency	203	(1)
Skin Injury and Pressure Sores	204	(1)
Emotional Issues	204	(2)
Compliance: Whose Problem Is It Anyway?	204	(1)
Adjustment Problems: Confronting Disability	205	(1)
Learned Helplessness	206	(1)
Depression	206	(1)
Parent-to-Parent	206	(3)
CHAPTER 10. Focus ON THE FAMILY	209	(14)
Family-Centered Care	209	(1)
The Three R's: Roles, Relationships, and Responsibilities	210	(3)
Mothers and Fathers: Parental Advocacy	213	(2)
Husbands and Wives	215	(1)
Brothers and Sisters	215	(1)
Grandparents and the Extended Family	216	(1)
Culture and Ethnicity	217	(1)
Lessons in Resilience: Families Bouncing Back	217	(1)
Money Matters: Benefits, Taxes, and Estate Planning	218	(3)
Social Security Benefits	218	(1)
Work Incentive Programs	219	(1)
Income Tax	219	(2)
Health Insurance, Health Care Reform, and the Family	221	(2)
CHAPTER 11. Focus ON EDUCATION AND WORK	223	(20)
Public Law 99-457 and Early Intervention	224	(1)
Public Laws 94-142 and 101-476 (IDEA) and the Individualized Education Plan (IEP)	225	(2)
What's So Special about Special Education?	227	(1)
Parent-Teacher Cooperation and School Advocacy	228	(1)
Education Management Strategies	229	(1)
Transition Planning: High School and Beyond	229	(5)
Higher Education and Adult Training	234	(1)
Making It in the World of Work	235	(1)
The Americans with Disabilities Act (ADA)	236	(2)
Friends and Friendships	238	(1)
Leisure Skills and Recreational Opportunities	238	(5)
APPENDIX: DIRECTORY OF SPINA BIFIDA ASSOCIATIONS	243	(10)
REFERENCES AND SUGGESTIONS FOR FURTHER READING	253	(8)
INDEX	261