Spina Bifida: Understanding and Managing the Condition across the Lifespan

Spina Bifida breaks down the medical complexity of the condition into a clear, lifelong roadmap, combining world-class clinical expertise with lived experiences to empower all those involved from diagnosis to adulthood. Whether you are an individual navigating your own care, a parent or family member supporting a loved one, or a healthcare professional looking for a broader perspective, this practical guide offers the expert-backed clarity needed to manage spina bifida with confidence. Key features: Clinical excellence: Delivers detailed medical insights and best-practice evidence-based treatment options. Holistic perspective: Explores how spina bifida impacts development, participation, and overall quality of life. Lifelong focus: Provides tailored guidance that evolves alongside the needs of children, adolescents, and adults. Empowered outcomes: Equips families with the tools and confidence to partner effectively with healthcare teams for optimal long-term health. The Gillette Children's Healthcare Series distills medical complexity into clear, actionable roadmaps for childhood-acquired physical and neurological conditions. By bridging the gap between clinical research and daily reality, this definitive collection provides a vital guide for those living with a lifelong condition. Whether you are an individual navigating your own health journey, a parent or family member supporting a loved one, or a healthcare professional seeking a broader multidisciplinary perspective, this series provides the expert-backed clarity needed to manage the condition with confidence. Co-published by Mac Keith Press and Gillette Children's Healthcare Press, the series is built on a foundation of collaborative expertise. Every book combines evidence-based, best-practice treatments led by medical specialists with the invaluable lived experiences of individuals and families.

Author and Editors Series Foreword Series Introduction 1. Neural tube defects and the central nervous system 1.1. Introduction 1.2. Prevalence and risk factors 1.3. Diagnosis 1.4. Embryology and neural tube defects 1.5. Anatomy and function of the central nervous system (Teresa Schultz APRN, CNP-Pediatrics) 2. An overview of spina bifida 2.1. Introduction 2.2. Impact of spina bifida on the spine, spinal cord, and brain (Teresa Schultz, APRN CNP-Pediatrics) 2.3. Types of spina bifida 2.4. Prognosis 2.5. Functional ability 2.6. Associated conditions 3. Spina bifida in the prenatal to newborn stage 3.1. Introduction 3.2. Prenatal counseling 3.3. Prenatal and postnatal surgery 3.4. Pregnancy and birth considerations 3.5. The newborn with spina bifida: care and considerations 4. Anatomy and function 4.1. Introduction 4.2. The bowel (Liza Beilke May, DNP, APRN, CPNP-PC) 4.3. The bladder (Liza Beilke May, DNP, APRN, CPNP-PC) 4.4. The reproductive system 4.5. The musculoskeletal system (Kyleen Kriha, PT) 5. Management of spina bifida: An overview 5.1. Introduction 5.2. Best practice for spina bifida 5.3. Getting the most out of appointments 5.4. Overall management 5.5. Nutrition 5.6. Mobility 5.7. Exercise and physical activity (Kaitlin Lewis, CTRS) 6. Neurological conditions and their management Teresa Schultz, APRN, CNP-Pediatrics 6.1. Introduction 6.2. Hydrocephalus 6.3. Chiari malformation type II 6.4. Syrinx 6.5. Tethered cord 6.6. Seizures and epilepsy 6.7. Management of neurological conditions 7. Neurogenic bowel and bladder Liza Beilke May, DNP, APRN, CPNP-PC, Alonso Carrasco, MD, Jenna Katorski, APRN, CNP, Katherine Nelson, DNP, APRN, CNP, and David Vandersteen, MD 7.1. Introduction 7.2. Neurogenic bowel 7.3. Neurogenic bladder 8. Management of neurogenic bowel Liza Beilke May, DNP, APRN, CPNP-PC, Alonso Carrasco, MD, Jenna Katorski, APRN, CNP, Katherine Nelson, DNP, APRN, CNP, and David Vandersteen, MD 8.1. Introduction 8.2. Bowel health: program, equipment, and cleanout 8.3. Neurogenic bowel management 8.4. Bowel-related complications 9. Management of neurogenic bladder Liza Beilke May, DNP, APRN, CPNP-PC, Alonso Carrasco, MD, Jenna Katorski, APRN, CNP, Katherine Nelson, DNP, APRN, CNP, and David Vandersteen, MD 9.1. Introduction 9.2. Neurogenic bladder management 9.3. Bladder management evaluation 9.4. Urinary system complications 10. Reproductive system conditions and their management 10.1. Introduction 10.2. Conditions of the reproductive system 10.3. Management of conditions of the reproductive system 11. Musculoskeletal conditions Stephen England, MD, Megan Haselbauer, PA-C, and Kyle Miller, MD 11.1. Introduction 11.2. Bone, joint, and muscle conditions 11.3. Lower extremity conditions 11.4. Hip and spine conditions 11.5. Upper extremity conditions 11.6. Short stature 12. Management of musculoskeletal conditions Stephen England, MD, Megan Haselbauer, PA-C, and Kyle Miller, MD 12.1. Introduction 12.2. Physical therapy (Kyleen Kriha PT) 12.3. Assistive technology (Joseph Berdan, ATP, Danielle Harding, PA-C, Kyleen Kriha, PT, Kaitlin Lewis, CTRS, and Kathryn Pimentel, MPO, CPO) 12.4. Medical management, casting, and orthopedic surgery 13. Skin Conditions and their management Joseph Berdan, ATP, and Jennifer Wilhelmy, CWCN, APRN, CNP 13.1. Introduction 13.2. Insensate skin 13.3. Skin breakdown and wounds 13.4. Pressure injuries and pressure injury prevention 13.5. Wound management 13.6. Wound complications 14. Other physical conditions and their management 14.1. Introduction 14.2. Obesity 14.3. Metabolic syndrome 14.4. Lymphedema 14.5. Sleep-related breathing disorders (John Garcia, MD) 14.6. Pain 14.7. Latex allergy 14.8. Eye conditions 15. Neuropsychological and mental health conditions and their management Richard DiPrima, PsyD, LP, Margaret Grace, PhD, LP, Erin Ingvalson, MS, CCC, SLP, and Candice Johnson, OTD, OTR/L 15.1 Introduction 15.2 Neuropsychological conditions and testing, and neurocognitive profile 15.3 Management of neuropsychological conditions 15.4 Mental health conditions and their management 16. Community integration, education, independence, and transition to adult health care Tori Bahr, MD, and Giancarlo Perez-Albela, MD 16.1. Introduction 16.2. Community integration 16.3. Education 16.4. Adaptive driving 16.5. Independence 16.6. Transition to adulthood and adult health care 17. Adulthood Jenna Katorski, APRN, CNP, Katherine Nelson, DNP, APRN, and Giancarlo Perez-Albela, MD CNP 17.1. Introduction 17.2. Aging in the typical population 17.3. Aging with spina bifida 17.4. Management of spina bifida in adulthood 17.5. Employment 17.6. Family planning, pregnancy, and parenting 18. Living with spina bifida 19. Further reading and research Elizabeth R. Boyer, PhD Acknowledgments Appendices (Online) Appendix 1: Neurons (nerve cells) Appendix 2: Multidisciplinary team members and their roles Appendix 3: Epilepsy management Appendix 4: Gait analysis Appendix 5: Transfer aids and vehicle transportation Appendix 6: Noninvasive assisted ventilation Glossary References Index