Spina Bifida
Translations
About Spina Bifida
Neural tube defects are birth defects that impact the brain, spine, or spinal cord. Spina bifida is the most common neural tube defect, occurring in 1 in every 2,875 US births per year. It is a condition that occurs when the spine and spinal cord do not close completely. The spinal cord carries messages between the brain and the body. When it does not form properly, it can impact movement, sensation in the legs, and control of the bladder and bowel. Spina bifida happens very early in pregnancy.
Preventing Spina Bifida in Babies
The most effective prevention method is taking 400 micrograms of folic acid daily before pregnancy and during early pregnancy.
- Large clinical trials have shown that folic acid supplementation before and during early pregnancy significantly reduces the risk of NTDs.
- Parents who previously had a pregnancy affected by a NTD may need a higher dose, as recommended by a healthcare provider.
- Countries that added folic acid to foods, including the United States, have seen fewer cases of neural tube defects.
Managing diabetes and reviewing medications with your provider before pregnancy are also important prevention steps.
Any adult with spina bifida can have children. People with spina bifida should talk with healthcare providers before pregnancy to discuss appropriate folic acid supplementation and health planning specific to their individual medical needs.
Early Detection of Spina Bifida
Spina bifida can often be detected during pregnancy, sometimes as early as the first or second trimester. Early detection is important because it helps families and doctors plan the best care for the baby. In some cases, surgery may even be planned before or shortly after delivery to improve outcomes.
Doctors usually use a few common tests to detect spina bifida:
- Ultrasound: This is the most common method. It uses sound waves to create images of the baby and can show if the spine is not developing properly.
- Blood test: An alpha-fetoprotein test is a blood test that checks the level of alpha-fetoprotein in the mother’s blood. Higher levels may suggest a higher chance of spina bifida.
- Amniocentesis: In some cases, doctors may take a small sample of the fluid around the baby to confirm the diagnosis.
Starting prenatal care as soon as you become pregnant can help reduce your risks of spina bifida and, if your baby has spina bifida, ensure that it is detected as early as possible.
Causes of Spina Bifida
The exact cause of spina bifida is unknown, but research suggests both genetic and environmental influences may contribute to problems in neural tube development.
Low levels of folic acid (vitamin B9) before and during early pregnancy is an important factor contributing to the development of spina bifida.
Some other factors increase the chances of having a baby with spina bifida:
- Having diabetes before pregnancy
- Obesity before pregnancy
- Taking certain anti-seizure medications, especially valproate
- Having a previous pregnancy affected by a neural tube defect
The New York State Department of Health participates in the Birth Defects Study to Evaluate Pregnancy exposures (BD-STEPS), which is a nationwide effort to find causes of birth defects, including spina bifida.
Types of Spina Bifida
Spina bifida occulta is a mild form of spina bifida characterized by a small gap in the spine. Most people with this type do not have symptoms.
In meningocele, protective membranes that cover the brain and spinal cord called meninges push out through an opening in the spine, creating a fluid-filled sac. Neither the spinal cord nor nerves are in this sac, so this type generally presents without symptoms.
Myelomeningocele is the most common and severe type of spina bifida. In this type, a sac containing parts of the spinal cord, meninges, and associated nerves protrudes through an opening in the spine. As a result, individuals often experience significant and long-term complications, including paralysis of the lower limbs, impaired bladder and bowel control, and an increased risk of infections such as meningitis.
Living with Spina Bifida
After birth, doctors may use additional imaging tests to better understand the condition.
Symptoms depend on the type and severity of spina bifida. Some common challenges include:
- Weakness or paralysis in the legs
- Loss of feeling in parts of the lower body
- Difficulty controlling bladder and bowel function
- Fluid buildup in the brain (hydrocephalus), which may require surgical placement of a shunt to drain excess fluid and reduce pressure on the brain
- Bone and joint problems, including scoliosis, clubfoot, and dislocation of the hip
- Some children may have learning challenges, especially if they develop hydrocephalus. Early therapy and school support can help.
Each person is different, and symptoms depend on the type and severity of the condition.
Spina Bifida Treatment and Care
Spina bifida treatment depends on severity. Treatment may involve a multidisciplinary approach focusing on surgical repair, symptom management, and improving quality of life. The Spina Bifida Association has developed guidelines for the care of people with spina bifida from birth through adulthood.
Surgery
Babies with myelomeningocele usually need surgery to close the opening in their back. This can be done after birth (postnatal surgery) or, in some cases, before birth (prenatal surgery). A major clinical trial showed that prenatal surgery for spina bifida can improve some movement outcomes and reduce the need for brain shunt placement, but it also carries pregnancy risks. Early surgery and coordinated care between healthcare providers reduces complications and improves mobility, bladder health, and long-term independence.
Bladder Care
Many people with spina bifida need ongoing bladder management to protect kidney health and improve daily life. This care may involve monitoring, catheterization, medication and surgery.
Physical Therapy and Support
People with spina bifida may benefit from:
- Physical therapy
- Mobility devices (braces, walkers, wheelchairs)
- Regular skin checks to prevent and minimize pressure injuries
Long-term Care
People with spina bifida often face long-term care challenges that require ongoing management. Many require continuous monitoring for mobility limitations, bladder and bowel dysfunction, and potential complications such as infections or pressure sores. People with spina bifida can experience problems with cognitive functioning that may result in difficulties adhering to medications, coordinating and attending medical appointments, and maintaining independence in daily activities.
Despite these challenges, early intervention, appropriate medical care, and strong family and community support can significantly improve outcomes among people with spina bifida. Many individuals with spina bifida lead long, active, and productive lives. Over time, advances in surgical techniques, rehabilitation, and coordinated care have contributed to better survival and improved quality of life.
