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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Pediatric Neurosurgery · Spina Bifida

Building Your Care Team: Coordinating Your Child's Specialists

At a Glance

Children with spina bifida need a multidisciplinary medical team—including neurosurgeons, urologists, and orthopedists—for optimal care. Families should seek coordinated clinics, plan delivery at advanced NICU hospitals, and maintain a strict latex-free environment to prevent severe allergies.

Spina bifida is a complex condition that affects multiple systems in the body, from the brain and spine to the bladder and bones [1]. Because of this, “one-doctor” care is not enough. Research shows that children do best when they are cared for by a multidisciplinary team—a group of specialists who work together in a single clinic to coordinate your child’s treatment plan [2][3].

The Latex Allergy Risk: Crucial Safety Information

Individuals with spina bifida have an extremely high risk (up to 70%) of developing severe, potentially life-threatening latex allergies due to repeated exposures during early surgeries and catheterizations [4]. It is critical to maintain a strictly latex-free environment from birth. Ensure pacifiers, bottle nipples, medical tape, and even household items like balloons are completely latex-free to prevent this allergy from developing.

Your Child’s Core Specialists

A dedicated Spina Bifida clinic typically includes the following experts, all focused on your child’s unique needs:

  • Pediatric Neurosurgeon: Manages the spinal repair, monitors for hydrocephalus (fluid in the brain), and tracks the status of brain shunts or other fluid-management systems [5][6].
  • Pediatric Urologist: Monitors kidney health and manages neurogenic bladder (bladder dysfunction), which is essential for preventing infections and kidney damage [7][8].
  • Pediatric Orthopedist: Focuses on bone health, including the management of scoliosis, hip stability, and foot positioning (such as clubfoot) [1].
  • Physical and Occupational Therapists: Work with your child to maximize mobility, strength, and independence in daily activities [9].
  • Nurse Coordinator: The “glue” of the team who helps you navigate appointments and ensures all specialists are on the same page [5].
  • Maternal-Fetal Medicine (MFM) Specialist: During pregnancy, this high-risk pregnancy doctor coordinates prenatal care and oversees the delivery plan [10].

Planning for Delivery

Where and how your baby is born are critical parts of the care strategy.

  • Hospital Level: Babies with spina bifida should be delivered at a hospital with a Level III or IV Neonatal Intensive Care Unit (NICU) [5]. This ensures that pediatric neurosurgeons and neonatologists are available immediately after birth to protect the spinal nerves and perform surgery if needed [6].
  • Delivery Method: For many years, C-sections were standard for open spina bifida. However, recent research suggests that a C-section does not necessarily improve a baby’s motor outcomes compared to a vaginal delivery [11]. The method often depends on whether you had fetal surgery; mothers who had open prenatal surgery must deliver via C-section to protect the uterine scar, while those who had fetoscopic repair may be candidates for a vaginal birth [12][13].

Vetting Your Care Center

When choosing a fetal surgery center or a pediatric Spina Bifida clinic, it is helpful to evaluate them based on their experience and structure. Consider these factors:

  1. Experience: Does the center meet the “benchmarks” of the MOMS trial? Centers with high volumes of patients often have more consistent outcomes [14][15].
  2. Coordination: Does the clinic allow you to see multiple specialists in a single visit? Coordinated care reduces the burden on families and ensures a unified medical plan [2].
  3. Support Services: Does the clinic provide access to social workers, mental health professionals, and transition specialists who help prepare teenagers for adult care? [16][17]
  4. Evidence-Based Care: Does the team follow the guidelines set by the Spina Bifida Association (SBA)? Following these national standards ensures your child receives the most current, proven treatments [18][19].

Common questions in this guide

Which doctors should be on my child's spina bifida care team?
A multidisciplinary team typically includes a pediatric neurosurgeon, pediatric urologist, orthopedist, physical and occupational therapists, and a nurse coordinator. During pregnancy, a maternal-fetal medicine specialist will also help oversee care.
Why is a latex allergy a risk for children with spina bifida?
Children with spina bifida have up to a 70% risk of developing severe latex allergies due to repeated exposures during early surgeries and medical procedures. You must maintain a strictly latex-free environment from birth, including pacifiers and medical tape, to prevent this allergy.
Where should a baby with spina bifida be born?
Babies with spina bifida should be delivered at a hospital with a Level III or IV Neonatal Intensive Care Unit (NICU). This ensures that pediatric neurosurgeons and neonatologists are available immediately after birth to protect the spinal nerves and perform surgery if needed.
Do I have to have a C-section if my baby has spina bifida?
The method often depends on whether you had fetal surgery. Mothers who had open prenatal surgery must deliver via C-section to protect the uterine scar, while those who had fetoscopic repair or no fetal surgery may be candidates for a vaginal birth.
How do I choose the best spina bifida clinic for my child?
Look for an experienced center with a high volume of patients where specialists work together in a single clinic. It is also important that the clinic follows the national care guidelines established by the Spina Bifida Association.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Does this center participate in a national registry for Spina Bifida to track long-term outcomes?
  2. 2.What are your center's specific rates for shunt placement and walking ability compared to the MOMS trial benchmarks?
  3. 3.Who will be our primary point of contact or nurse navigator to coordinate the different specialty appointments?
  4. 4.Which Level NICU (III or IV) will my baby be admitted to, and are pediatric neurosurgeons available on-site 24/7?
  5. 5.What is the transition plan for when my child reaches adulthood and needs adult multidisciplinary care?
  6. 6.What specific latex-free protocols does this hospital have in place for the NICU and operating room?

Questions For You

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

References

References (19)
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    Variation in bowel and bladder continence across US spina bifida programs: A descriptive study.

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This page provides educational information about building a spina bifida care team. It does not replace professional medical advice from your child's pediatrician or specialists.

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