Spina Bifida

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.

“This book does a phenomenal job of describing all the different ways the condition can affect a person. It also caters to different audiences—people with spina bifida, parents, and those who take care of people with the condition.”
—GRACIE HADLICH, AN ADULT LIVING WITH SPINA BIFIDA

“This handsome resource belongs in the hands of every individual with spina bifida and on the shelf of every professional serving this complex population.”
—JONATHAN CASTILLO, MD, MPH, FAAP

“Spina Bifida is a highly accessible resource that weaves together medical expertise with practical information for people living with the condition.”
—NIENKE DOSA, MD, MPH

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.

Read a Q&A with author Dr. Kelly Cho, pediatric physiatrist and medical director of the pediatric spina bifida program at Gillette Children’s.

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.

You can now purchase the complete Gillette Children’s Healthcare Series bundle at a 30% discount via this link.

Other titles in the series include:

• Craniosynostosis
• Idiopathic Scoliosis
• Spastic Hemiplegia—Unilateral Cerebral Palsy
• Spastic Quadriplegia—Bilateral Cerebral Palsy
• Spastic Diplegia—Bilateral Cerebral Palsy, second edition
• Epilepsy
• Scoliosis—Congenital, neuromuscular, syndromic, and other nonidiopathic types
• Osteogenesis Imperfecta

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
with Teresa Schultz APRN, CNP-Pediatrics

Key points Chapter 1

2. An overview of spina bifida

2.1.        Introduction

2.2.        Impact of spina bifida on the spine, spinal cord, and brain
with Teresa Schultz, APRN CNP-Pediatrics

2.3.        Types of spina bifida

2.4.        Prognosis

2.5.        Functional ability

2.6.        Associated conditions

Key points Chapter 2

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

Key points Chapter 3

4. Anatomy and function

4.1.        Introduction

4.2.        The bowel
with Liza Beilke May, DNP, APRN, CPNP-PC

4.3.        The bladder
with Liza Beilke May, DNP, APRN, CPNP-PC

4.4.        The reproductive system

4.5.        The musculoskeletal system
with Kyleen Kriha, PT

Key points Chapter 4

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
with Kaitlin Lewis, CTRS

Key points Chapter 5

6. Neurological conditions and their management
   with 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

Key points Chapter 6

7. Neurogenic bowel and bladder
   with 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

Key points Chapter 7

8. Management of neurogenic bowel
   with 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

Key points Chapter 8

9. Management of neurogenic bladder
   with 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

Key points Chapter 9

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

Key points Chapter 10

11. Musculoskeletal conditions
    with 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

Key points Chapter 11

12. Management of musculoskeletal conditions
    with Stephen England, MD, Megan Haselbauer, PA-C, and Kyle Miller, MD

12.1.     Introduction

12.2.     Physical therapy
with Kyleen Kriha PT

12.3.     Assistive technology
with 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

Key points Chapter 12

13. Skin Conditions and their management
    with 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

Key points Chapter 13

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
with John Garcia, MD

14.6.     Pain

14.7.     Latex allergy

14.8.     Eye conditions

Key points Chapter 14

15. Neuropsychological and mental health conditions and their management
    with 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

Key points Chapter 15

16. Community integration, education, independence, and transition to adult health care
    with 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

Key points Chapter 16

17. Adulthood
    with 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

Key points Chapter 17

18. Living with spina bifida
19. Further reading and research
    with 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