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PubMed This is a summary of 77 peer-reviewed journal articles Updated
Neurosurgery · Spina Bifida

Navigating Spina Bifida: A Comprehensive Guide

At a Glance

Spina bifida is a neural tube defect where the spine and spinal cord do not form properly. Care requires a lifelong, multidisciplinary approach involving neurosurgery, urology, and orthopedics. Treatment primarily involves surgical repair, which can be done in-utero or shortly after birth.

Welcome to the comprehensive guide on Spina Bifida and other spinal dysraphisms. Receiving a diagnosis of spina bifida for your child—or navigating care as an adult—can feel overwhelming. This guide is designed to translate complex medical information into clear, empowering language so you can advocate effectively for yourself or your child.

Spina bifida is a condition that occurs when the spine and spinal cord don’t form properly. It falls under the broader category of neural tube defects. Because this condition can affect multiple systems in the body, understanding the medical landscape is critical for making informed decisions.

In this guide, you will find four detailed sections:

01

Understanding Spina Bifida: Types and Biology

Learn about the different types of spina bifida, including myelomeningocele and occulta. Understand the biology, causes, and risk factors of these defects.

02

Diagnosis: Prenatal Findings and Newborn Screenings

Learn how spina bifida is diagnosed. Understand prenatal ultrasound findings like the lemon sign, MSAFP tests, fetal MRIs, and newborn skin markers.

03

Surgical Decisions: Prenatal and Postnatal Repair

Learn about surgical options for myelomeningocele (spina bifida). Compare the risks and benefits of prenatal in-utero surgery versus postnatal repair.

04

Lifelong Care: Building Your Spina Bifida Care Team

Learn how to manage spina bifida with a multidisciplinary care team. Understand the vital roles of neurosurgery, urology, and orthopedics for lifelong health.

Each page is designed to inform you and prepare you for productive discussions with your medical team. You are not alone on this journey, and being informed is your best tool.

Common questions in this guide

What is spina bifida?
Spina bifida is a type of neural tube defect that occurs when a developing baby's spine and spinal cord do not form completely. This can lead to various physical and neurological challenges depending on the specific type and severity of the condition.
What is the difference between open and closed spina bifida?
Open spina bifida involves the spinal cord and nerves being exposed through an opening in the back. Closed spina bifida means the spinal cord is covered by skin but still has an underlying defect in the bone and surrounding structures.
Can spina bifida be diagnosed before birth?
Yes, spina bifida is often identified before birth using routine prenatal screenings like ultrasounds and fetal MRIs. These imaging tests can detect structural issues in the developing spine and help your medical team plan for care.
What are the surgical treatment options for spina bifida?
The standard treatment for open spina bifida is surgical repair. Depending on the specific case, this surgery can sometimes be performed in-utero before the baby is born, or it may be done shortly after birth.
What specialists should be on my spina bifida care team?
Lifelong care for spina bifida typically requires a coordinated, multidisciplinary approach. Your core care team will likely involve neurosurgeons, urologists, and orthopedists to manage the complex needs associated with the condition.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What specific resources or support groups do you recommend for parents and families of newly diagnosed children?
  2. 2.How will our care be coordinated between the different specialists?
  3. 3.Do you have a dedicated multidisciplinary clinic for spina bifida?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

This comprehensive guide on spina bifida is for educational purposes only and does not replace professional medical advice. Always consult your multidisciplinary care team to discuss personalized treatment, surgical options, and lifelong management.

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