Spina Bifida in the NICU: From First Breath to Recovery

October is Spina Bifida Awareness Month, and in the NICU, this diagnosis often marks one of the most intense and humbling beginnings we witness. For many nurses, caring for a baby born with spina bifida is both a technical and emotional challenge—one that demands precision, teamwork, and deep compassion.

The Delivery Room: Protect, Warm, Communicate

In that first critical moment after birth, the NICU nurse’s role is protection and coordination. The defect must be covered immediately with a sterile, saline-moistened, non-adherent dressing, and the baby kept prone or side-lying to avoid pressure or contamination.

At the same time, we’re assessing airway, breathing, and circulation, maintaining thermoregulation, and ensuring all care is latex-free. The atmosphere in the delivery room can be tense—parents are frightened, and multiple teams are present—but a calm, organized approach builds confidence for everyone in the room.

Admission and Stabilization: Setting the Foundation

Upon NICU admission, nurses lead the stabilization process. The baby remains NPO until surgical planning is complete, IV fluids are started, and neurosurgery is consulted. Documentation is meticulous—size and appearance of the defect, tone and movement in the lower extremities, and early signs of infection or hydrocephalus.

Head circumference is measured and trended daily, and neuro checks become part of every assessment. The NICU nurse becomes the eyes and ears for subtle changes that can guide timing of surgery and prevent complications before they start.

Postnatal Surgical Repair: The Turning Point

Most infants undergo surgical closure within the first 24–48 hours. For the bedside nurse, this is a delicate balance between maintaining stability and preventing infection while supporting the surgical team’s timing and preparation.

After repair, the focus shifts to wound protection, neurologic monitoring, and hydrocephalus surveillance. Dressings are changed under sterile technique, positioning remains prone or side-lying, and hydrocephalus is monitored through head measurements and imaging.

Urinary care often transitions to Clean Intermittent Catheterization (CIC) once the Foley is removed, and urology becomes part of the daily plan. Pain management and thermoregulation remain priorities.

Looking Beyond the NICU: Long-Term Outcomes and Family Partnership

Infants with spina bifida often require lifelong multidisciplinary care—neurosurgery, urology, orthopedics, PT/OT, and developmental follow-up. The level of the lesion predicts mobility and continence outcomes, but early nursing care directly influences infection prevention, shunt management, and family confidence.

Parents depend on nurses to translate complex care into manageable steps—how to position their baby, signs of shunt malfunction, how to perform catheterization, and where to find support. It’s the blend of science, skill, and empathy that defines our role.

Final Reflection

Spina bifida reminds us that NICU nursing is as much about preparation as it is about presence. From the sterile setup before delivery to the final family teaching before discharge, every step matters.

When we approach these moments with knowledge, calm, and compassion, we give each baby the best possible start—and we remind families that they are never facing this journey alone. 💛