Spina bifida is a birth condition where the spine and spinal cord don’t close properly during early development in the womb. Treatment focuses on managing symptoms, preventing complications, and improving quality of life through a combination of surgery, supportive therapies, and ongoing medical care tailored to each individual’s needs.

Managing a Complex Condition: What Treatment Means for Spina Bifida

Spina bifida is one of the most common birth defects affecting the central nervous system, occurring when the neural tube—the structure that eventually becomes the brain and spinal cord—doesn’t close completely during the first month of pregnancy. This leaves a gap in the spine that can affect the spinal cord, surrounding nerves, and the bones that protect them. Because spina bifida presents differently in each person, treatment approaches must be highly individualized, taking into account the type and severity of the condition, the location of the spinal opening, and the specific health challenges that arise.^[1][2]

The primary goals of treatment are to protect the exposed spinal tissue, prevent further nerve damage, address complications such as fluid buildup in the brain, and support physical and cognitive development throughout the person’s life. For some individuals with the mildest form of spina bifida, treatment may not be necessary at all. For others born with more severe forms, treatment begins immediately after birth—or even before—and continues throughout childhood, adolescence, and into adulthood. The care team typically includes specialists from multiple disciplines, such as neurosurgery, urology, orthopedics, and physical therapy, all working together to provide comprehensive support.^[3][15]

While there is no cure for spina bifida, modern medical treatments and supportive care have dramatically improved outcomes. Many people with spina bifida now live into adulthood and lead fulfilling, independent lives. Understanding the standard treatments available today, as well as the innovative therapies being tested in clinical trials, empowers families and individuals to make informed decisions about their care.^[5][16]

Standard Treatment Approaches

Surgery Shortly After Birth

For babies born with myelomeningocele—the most severe and common form of spina bifida—surgery is typically performed within 24 to 48 hours after birth. The primary purpose of this surgery is to close the opening in the spine and protect the exposed spinal cord and nerves from further damage and infection. During the procedure, a surgeon carefully places the spinal cord and any protruding tissues back into their proper position within the spinal canal. The gap in the vertebrae is then closed, and the overlying muscle and skin are stitched over the defect to seal it.^[3][11]

While this surgery is life-saving and prevents additional injury, it cannot reverse nerve damage that has already occurred during fetal development. This means that children may still experience challenges with mobility, bladder and bowel control, and other neurological functions even after successful surgery. The extent of these challenges depends on where the opening was located on the spine and how much nerve tissue was affected before the surgery took place.^[13]

Managing Hydrocephalus

Between 70 and 90 percent of babies born with myelomeningocele develop hydrocephalus, a condition where excess fluid accumulates in and around the brain. This happens because the normal flow and absorption of cerebrospinal fluid is disrupted, causing the fluid-filled spaces in the brain, called ventricles, to enlarge. If left untreated, hydrocephalus can cause increased pressure inside the skull, potentially leading to brain damage, developmental delays, and other serious complications.^[3][15][24]

The standard treatment for hydrocephalus involves surgically placing a shunt—a thin, hollow tube—into the brain to drain excess fluid. One end of the shunt is positioned in a ventricle within the brain, while the other end is tunneled under the skin to another part of the body, most commonly the abdomen, where the fluid can be safely absorbed. The shunt includes a valve that regulates the flow of fluid to maintain proper pressure levels inside the skull. While shunts are highly effective, they can sometimes become blocked or infected, requiring additional surgeries to repair or replace them as the child grows.^[15][24]

Addressing Tethered Spinal Cord

Many individuals with spina bifida develop a condition called tethered spinal cord, where the spinal cord becomes abnormally attached to surrounding tissues. Normally, the lower end of the spinal cord floats freely within the spinal canal. When it becomes tethered, or stuck, the spinal cord stretches as the person grows, which can cause progressive nerve damage. Symptoms of a tethered cord may include worsening back pain, increasing weakness in the legs, changes in walking ability, new problems with bladder or bowel control, and spinal curvature known as scoliosis.^[15][24]

Treatment for a tethered spinal cord involves surgery to release the abnormal attachments and allow the spinal cord to move freely again. This procedure can help prevent further nerve damage and may stabilize or improve existing symptoms. Regular monitoring throughout childhood and adolescence is important to detect tethering early, as timely intervention can make a significant difference in outcomes.^[24]

Physical Therapy and Mobility Support

Physical therapy plays a crucial role in helping individuals with spina bifida develop strength, improve mobility, and maintain independence. A physical therapist works with the child and family to create a personalized exercise program designed to strengthen muscles, improve range of motion, and prevent contractures—a shortening of muscles and tendons that can limit movement. Therapy often begins in infancy and continues throughout childhood and into adulthood, adapting to the person’s changing needs and abilities.^[13]

Depending on the severity and location of the spinal defect, individuals may use various mobility aids. Some children and adults walk independently, while others may need braces, crutches, walkers, or wheelchairs to get around. The type of mobility aid used often depends on where the opening in the spine occurred—those with defects higher on the spine near the head may have more extensive paralysis and rely on wheelchairs, while those with lower defects may walk with or without assistance. Regular physical activity and adaptive sports programs are encouraged to promote overall health, prevent obesity-related conditions, and support social and emotional well-being.^[18]

Bladder and Bowel Management

Many people with spina bifida experience challenges with bladder and bowel control due to nerve damage affecting these functions. Without proper management, bladder problems can lead to urinary tract infections, kidney damage, and social difficulties. A urologist, working as part of the care team, helps develop an individualized bladder management plan that may include scheduled voiding, use of a catheter to drain urine from the bladder several times a day, medications to help the bladder relax and hold more urine, or surgical procedures to improve bladder function or capacity.^[13][15][24]

Bowel management is equally important and may involve dietary changes such as increasing fiber intake, using medications like laxatives or stool softeners, employing suppositories or enemas, or learning techniques such as anal irrigation—a process where water is gently introduced into the bowel to stimulate emptying. In some cases, surgical procedures may be considered if other methods are not effective. Establishing a reliable bowel and bladder routine is essential for maintaining health, dignity, and participation in daily activities.^[13][15]

Orthopedic Care

Bone and joint problems are common in spina bifida and may include hip dislocation, club foot, scoliosis, and other deformities. An orthopedic surgeon may recommend treatments ranging from physical therapy and bracing to corrective surgeries. Early intervention can help prevent or minimize deformities, improve mobility, and reduce pain. Regular monitoring by an orthopedic specialist is important throughout childhood and adolescence, as bone and joint issues may change or worsen as the child grows.^[13]

Skin Care and Latex Allergy Management

Because nerve damage can cause reduced or absent sensation in certain areas of the body, individuals with spina bifida are at risk for skin injuries, pressure sores, and burns that they may not feel. Caregivers and individuals must regularly check the skin, especially areas that experience pressure from sitting or wearing braces, for redness, sores, or other signs of injury. Preventive measures include repositioning frequently, using cushioned seating, and avoiding extreme temperatures.^[18]

Many people with spina bifida develop an allergy to latex, likely due to repeated exposure to latex-containing medical supplies during surgeries and medical procedures. This allergy can cause skin reactions, breathing difficulties, and in severe cases, life-threatening reactions. It is important to avoid latex products such as certain gloves, catheters, and other medical supplies, and to inform all healthcare providers about the allergy.^[18]

Treatment in Clinical Trials

Fetal Surgery Before Birth

One of the most significant advances in spina bifida treatment is the option to perform surgery on the fetus while still in the womb. This approach, sometimes called prenatal or fetal surgery, aims to close the spinal opening before birth, potentially reducing nerve damage caused by prolonged exposure of the spinal cord to amniotic fluid. The theory is that by closing the defect earlier, further injury to the developing nervous system can be prevented, leading to better outcomes for the child.^[3][14]

The landmark MOMS trial (Management of Myelomeningocele Study) was a major clinical study that compared outcomes between babies who had prenatal surgery and those who had surgery after birth. The trial demonstrated that prenatal surgery reduced the need for shunt placement to treat hydrocephalus and improved mobility outcomes at 30 months of age. Children who underwent fetal surgery were more likely to walk independently compared to those who had surgery after birth. However, prenatal surgery is a major procedure with significant risks for both mother and baby, including preterm birth, uterine complications, and risks associated with major surgery. Not all mothers or fetuses are candidates for this procedure, and it is not available at all medical centers.^[14]

Fetoscopic Surgery

Researchers are also exploring less invasive methods of performing fetal surgery using a technique called fetoscopy. Instead of opening the mother’s abdomen and uterus with large incisions, fetoscopic surgery uses small instruments and cameras inserted through tiny openings. This minimally invasive approach may reduce some of the risks associated with traditional open fetal surgery, such as preterm labor and maternal complications. Clinical trials are ongoing to evaluate the safety and effectiveness of fetoscopic techniques for closing spinal defects before birth.^[14]

Innovative Approaches Using the Placenta

Some research teams are investigating the use of placental tissue and cells in the treatment of spina bifida. The placenta is rich in special cells that have regenerative and anti-inflammatory properties. Scientists are studying whether applying placental tissue or cells to the spinal defect during fetal or postnatal surgery could enhance healing, reduce inflammation, and potentially improve nerve function. These studies are still in early stages, and more research is needed to determine if these approaches are safe and effective.^[14]

Gene Therapy and Molecular Interventions

Understanding the genetic and molecular factors that contribute to spina bifida is an active area of research. Scientists are exploring the biological pathways involved in neural tube formation and closure, with the hope of identifying new targets for therapy. Gene therapy approaches, where specific genes are delivered to cells to correct defects or promote healing, are being investigated in laboratory settings. While these therapies are not yet available for human use, they represent a promising direction for future treatment options.

Stem Cell Research

Stem cells have the unique ability to develop into many different types of cells in the body. Researchers are investigating whether stem cells could be used to repair or regenerate damaged spinal cord tissue in individuals with spina bifida. Early-stage laboratory and animal studies are exploring how stem cells might be delivered to the site of injury and what conditions are needed for them to promote healing. This research is still in the experimental phase, and it will take many years of study before stem cell therapies could be tested in people with spina bifida.

Improved Shunt Technologies

Because shunt malfunctions and infections remain common complications for individuals with hydrocephalus, researchers are working to develop improved shunt designs and materials. Some studies are testing programmable shunts that can be adjusted non-invasively to change the rate of fluid drainage as needs change over time. Others are exploring coatings and materials that resist infection and reduce the likelihood of blockages. These innovations could reduce the number of surgeries needed over a person’s lifetime and improve overall outcomes.

Clinical Trials and Participation

Clinical trials are research studies that test new treatments, procedures, or ways of managing health conditions. Participation in clinical trials is voluntary and provides individuals and families with access to cutting-edge therapies that are not yet widely available. Trials are conducted in phases: Phase I trials test safety and dosage in a small number of participants; Phase II trials evaluate effectiveness and continue to monitor safety in a larger group; and Phase III trials compare the new treatment to standard treatments in an even larger population to confirm effectiveness and watch for side effects. Some clinical trials for spina bifida are being conducted in the United States, while others take place in Europe and other parts of the world. Families interested in participating should discuss options with their healthcare team and consider the potential benefits and risks.^[3]

Most Common Treatment Methods

• Surgical Repair of Spinal Defect
  • Performed within 24 to 48 hours after birth to close the opening in the spine and protect the spinal cord and nerves
  • Cannot reverse existing nerve damage but prevents further injury and infection
  • Fetal surgery before birth is also an option for selected cases
• Shunt Placement for Hydrocephalus
  • A thin tube is surgically implanted to drain excess fluid from the brain to the abdomen
  • Required in 70 to 90 percent of babies with myelomeningocele
  • May need replacement or repair if it becomes blocked or infected
• Physical Therapy
  • Personalized exercise programs to strengthen muscles and improve mobility
  • Helps prevent contractures and supports independent movement
  • Continues throughout life, adapting to changing needs
• Bladder and Bowel Management
  • Intermittent catheterization to drain urine and prevent infections
  • Medications to relax the bladder or support bowel function
  • Dietary modifications, such as increased fiber intake
  • Surgical procedures to improve bladder capacity or bowel control if needed
• Orthopedic Surgery
  • Corrective procedures for hip dislocation, club foot, scoliosis, and other bone and joint problems
  • Improves mobility, reduces pain, and prevents worsening deformities
• Surgery for Tethered Spinal Cord
  • Releases abnormal attachments to allow the spinal cord to move freely
  • Prevents progressive nerve damage as the child grows
• Mobility Aids and Adaptive Equipment
  • Braces, crutches, walkers, or wheelchairs to support movement and independence
  • Choice depends on the level and severity of the spinal defect
• Occupational Therapy
  • Helps individuals develop skills for daily living activities
  • Provides strategies and equipment to increase independence at home, school, and work

Ongoing Care and Support Throughout Life

Living with spina bifida is a lifelong journey that requires ongoing medical care, regular monitoring, and adjustments to treatment plans as individuals grow and their needs change. Children with spina bifida benefit from a coordinated care team that includes a primary care provider, neurosurgeon, urologist, orthopedic surgeon, physical therapist, occupational therapist, and other specialists as needed. Regular checkups help detect new problems early, such as changes in bladder function, worsening scoliosis, or signs of a tethered spinal cord.^[15][24]

As children with spina bifida transition into adolescence and adulthood, they face new challenges, including managing their own medical care, navigating healthcare systems designed for adults, and addressing issues related to sexuality, relationships, employment, and independent living. Transition programs and support services can help young adults develop the skills and confidence needed to take charge of their health. Many adults with spina bifida live independently, work, attend college, form relationships, and participate fully in their communities.^[23]

Mental and emotional health is also an important aspect of care. Living with a chronic condition can be challenging, and individuals with spina bifida may benefit from counseling, peer support groups, and connections with others who share similar experiences. Families also need support, as caring for a child with complex medical needs can be physically and emotionally demanding.^[18]

Prevention: The Role of Folic Acid

While not a treatment for those already born with spina bifida, it is important to note that many cases of spina bifida can be prevented. Research has shown that women who take adequate amounts of folic acid—a B vitamin—before conception and during early pregnancy can reduce the risk of neural tube defects by up to 70 percent. Folic acid helps build healthy cells and supports the proper closure of the neural tube during the critical first month of pregnancy, often before a woman knows she is pregnant. For this reason, all women of childbearing age are advised to take a daily multivitamin containing at least 400 micrograms of folic acid. Women who have already had a child with spina bifida or who have other risk factors may need higher doses.^[6][10]