Spina bifida is a lifelong condition, but a variety of treatments and interventions can greatly improve outcomes and quality of life for those affected. Treatment usually involves a combination of surgical management, medical therapies, and supportive care/rehabilitation. There is no simple “cure” for spina bifida, since we cannot yet regenerate a damaged spinal cord, but early and proactive treatment can prevent complications and maximize a child’s abilities.
In certain cases of myelomeningocele (the severe form of spina bifida), surgery can be performed while the baby is still in the womb. This is known as in utero fetal surgery (fetal repair). A landmark clinical trial called the MOMS Trial (Management of Myelomeningocele Study) demonstrated that prenatal surgery can significantly improve outcomes compared to postnatal repair (CDC, 2024b). In this procedure (typically done around 22–26 weeks of pregnancy), a skilled surgical team opens the mother’s uterus (either through a large incision or sometimes via smaller incisions with fetoscopic techniques) and surgically closes the baby’s spinal defect. By covering the exposed spinal cord sooner, this prevents ongoing damage to the nerves during the remainder of pregnancy. Prenatal surgery has been shown to reduce the risk of infant death, reduce the need for a shunt for hydrocephalus, and improve motor function at 30 months of age (CDC, 2024b). Children who had fetal repair are also more likely to walk independently than those who had surgery after birth (UCSF Benioff Children's Hospitals, n.d.). However, fetal surgery comes with risks to both mother and baby, including the possibility of preterm birth or maternal health complications. It’s only offered at specialized centers and if strict criteria are met. Fetal repair has now become an option for many families after a prenatal diagnosis – the care team will discuss if the baby is a good candidate. It represents a shift in spina bifida management: treating the condition before birth to limit damage rather than only after birth.
Whether or not fetal surgery was done, nearly all babies with open spina bifida will undergo surgery (postnatal repair). If fetal repair wasn’t performed, a neurosurgeon typically operates shortly after birth (usually within 24–48 hours) to close the opening in the back (UCSF Benioff Children's Hospitals, n.d.). The surgeon places the spinal cord and nerves back inside the spinal canal, removes the exposed sac if present, and closes the surrounding tissue layers. This protects the spinal cord and helps prevent infection. While this surgery doesn’t fix nerve damage that occurred in utero, it safeguards the baby’s health and starts the treatment process. Babies generally recover over a week or two in the neonatal intensive care unit.
Many children with myelomeningocele develop hydrocephalus (excess fluid on the brain), which is managed with a ventriculoperitoneal (VP) shunt. This flexible tube is inserted into the brain’s ventricles and drains fluid to the abdominal cavity (UCSF Benioff Children's Hospitals, n.d.). In some cases, endoscopic third ventriculostomy (ETV) may be used instead. Shunt systems often require long-term monitoring and occasional revision. Nonetheless, they are effective in preventing cognitive damage from hydrocephalus and are a standard part of care.
Children with spina bifida often need orthopedic support and physical therapy, beginning in infancy. Assistive devices like braces, walkers, or wheelchairs are commonly used. Orthopedic surgeons may treat clubfoot or scoliosis with casting, bracing, or surgery. Tethered cord syndrome, where scar tissue restricts the spinal cord’s movement, may also require surgery. Therapy and orthopedic care aim to improve mobility and independence throughout childhood and adolescence.
Most individuals with myelomeningocele have neurogenic bladder and bowel issues. Clean intermittent catheterization is typically started in infancy to drain the bladder regularly (UCSF Benioff Children's Hospitals, n.d.). Medications or surgery may be used to manage bladder pressure or incontinence. Bowel programs involve scheduled toileting, diet changes, and sometimes surgery for better control. With consistent care, many children achieve good continence and avoid infections.
Additional therapies may include speech therapy, educational accommodations, skin care to prevent pressure sores, and planning for transition to adult care. Attention to latex allergy, mental health, and social development are also part of long-term care. As patients age, topics like independence, sexuality, and employment support become important.
While current treatments manage spina bifida, researchers are actively exploring new therapies that could further improve outcomes—or even potentially cure or prevent the condition in the future. Here are a few promising avenues:
Researchers are adding regenerative therapies to fetal surgery using patches enriched with stem cells. These may help protect or heal spinal tissue better than surgery alone. Early results in some babies are promising, showing better-than-expected movement after birth.
Fetoscopic approaches use small incisions and cameras instead of open uterine surgery. Though technically complex, they may reduce maternal risk while offering similar benefits to the baby. Some centers are adopting these techniques as they evolve (Sanz Cortes et al., 2021).
Future possibilities include gene-specific drugs or supplements tailored to a fetus’s genetic risk. These could support neural tube development like folic acid does for MTHFR variants. Though still speculative, research is pointing toward personalized prevention strategies (Shatto, 2025).
Image source: Mayo Clinic. (2024). https://www.mayoclinic.org/fetoscopic-surgery-for-spina-bifida/vid-20474347
The fetoscopic approach uses small ports and a camera to repair the spinal defect inside the womb without fully opening the uterus. This technique reduces the risk of uterine rupture and preterm labor, making surgery safer for both the mother and baby.
Overall, the treatment of spina bifida has advanced dramatically. In the 1950s, many infants with open spina bifida did not survive due to infection or hydrocephalus. Today, with early surgery, shunts, and antibiotics, survival into adulthood is common. The focus has shifted to improving quality of life: enabling children to walk if possible (with braces or devices), ensuring they can manage bladder and bowel needs, and supporting their education and social integration. For example, specialized clinics follow children as they grow, with teams including neurologists, neurosurgeons, orthopedic surgeons, urologists, physical therapists, and developmental specialists all working together. Adaptive technology – like custom wheelchairs, standing frames, computerized communication devices for those with learning issues – further help individuals achieve independence. As individuals with spina bifida reach adulthood, they may continue to face challenges (such as the need for additional surgeries or difficulties with employment and accessibility), but many pursue college, careers, and have families of their own.
One notable area of adult care is that women with spina bifida who become pregnant are at risk of having children with spina bifida as well, so preconception planning and high-dose folic acid are important (and delivery requires planning due to their spinal hardware or shunt considerations). The comprehensive care model for spina bifida, starting from infancy, has made it possible for roughly 166,000 Americans with spina bifida to live active lives today. Continued advances in treatment – especially the prospect of combining surgical and biological therapies – hold promise that tomorrow’s children with spina bifida will have even better outcomes, with fewer disabilities.