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Spina Bifida: Understanding and Managing the Condition across the Lifespan
A Practical Guide for Families

Kelly Cho (Author), Cheryl Tveit (Author), Rachelle Lavalier (Author), Lily Collison (Edited by), Linda E. Krach (Edited by), Tom F. Novacheck (Edited by)

9781952181238, Wiley

Paperback / softback, published 24 April 2026

574 pages
24.4 x 17 x 3.6 cm, 1.202 kg

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

Subject Areas: Other branches of medicine [MM]
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