When a child is born with spina bifida or the condition is detected during pregnancy, parents often face an overwhelming flood of medical information, decisions, and emotions. Understanding what spina bifida is, how it develops, and what care looks like can help families feel more prepared and less alone. This page explains spina bifida in clear terms, describes what causes it, outlines the range of symptoms and severity, and explains the medical care and support available to children and families in New York and nationwide.

What is Spina Bifida?

Spina bifida is a neural tube defect that occurs when the backbone and membranes surrounding the spinal cord do not close completely during the first few weeks of pregnancy. It is the most common permanently disabling birth defect of its kind.

The severity of spina bifida varies widely. Some children have a very mild form with few or no symptoms. Others are born with more serious forms that can affect movement, sensation, and internal organ function. The three main types are spina bifida occulta, meningocele, and myelomeningocele, each with different implications for health and development.

Spina bifida is not caused by anything a parent did or failed to do during pregnancy. In most cases, it occurs without any family history and results from a combination of genetic and environmental factors.

Types of Spina Bifida

Spina Bifida Occulta

This is the mildest form. The spinal cord and nerves are usually normal, and there may be only a small gap in the bones of the spine. Many people with spina bifida occulta never know they have it. Occasionally, there may be a small birthmark, dimple, or tuft of hair on the skin over the lower back. Most children with this type do not have symptoms or need treatment.

Meningocele

In meningocele, a sac of fluid pushes through an opening in the back. The spinal cord itself is usually not in the sac, but the protective membranes around it are. This form is less common and typically causes fewer problems than myelomeningocele, though some children may experience bladder or bowel issues.

Myelomeningocele

This is the most severe and most common serious form of spina bifida. In myelomeningocele, the spinal cord and nerves are either exposed or protrude through an opening in the spine, often visible as a sac on the baby’s back at birth. This type can cause significant challenges, including:

Paralysis or weakness in the legs
Loss of sensation below the level of the opening
Bladder and bowel dysfunction
Hydrocephalus, a buildup of fluid in the brain that often requires surgical treatment
Orthopedic problems such as clubfoot, hip dislocation, or scoliosis
In some cases, heart or kidney complications

Children with myelomeningocele typically need surgery soon after birth and ongoing care throughout their lives.

What Causes Spina Bifida?

Spina bifida develops very early in pregnancy, usually within the first month, often before a woman knows she is pregnant. The exact cause is not fully understood, but research has identified several important risk factors.

Folic Acid Deficiency

The most significant and preventable cause of spina bifida is a lack of folic acid (a B vitamin) in the mother’s diet before and during early pregnancy. Folic acid is essential for proper neural tube development. Women who do not get enough folic acid through food or supplements have a higher risk of having a baby with spina bifida.

Since 1998, grain products in the United States have been fortified with folic acid, which has led to a significant decrease in the number of babies born with neural tube defects. Still, many women do not get the recommended daily amount.

Genetic Factors

Genetics play a role, though most cases of spina bifida occur in families with no prior history. If a parent or sibling has spina bifida, the risk is slightly higher in future pregnancies. Researchers believe that multiple genes, interacting with environmental factors, contribute to the condition.

Maternal Health Conditions and Medications

Certain health conditions and medications can increase risk, including:

Diabetes that is not well controlled before and during pregnancy
Obesity
Use of certain anti-seizure medications, particularly valproic acid
Elevated body temperature in early pregnancy, such as from prolonged fever or excessive use of hot tubs or saunas

These factors do not guarantee that spina bifida will occur, but they do raise the likelihood.

Ethnicity and Geography

Spina bifida occurs more frequently in certain populations. In the United States, it is most common among Hispanic and non-Hispanic White populations. Globally, rates vary, with some regions reporting higher prevalence due to differences in diet, genetics, and access to prenatal vitamins.

How Common is Spina Bifida?

Spina bifida affects approximately 1 in every 2,875 births in the United States, or about 3 to 4 per 10,000 live births. That means roughly 1,500 to 2,000 babies are born with spina bifida each year in this country.

Worldwide, the rate is estimated at 0.5 to 1 per 1,000 births, with higher numbers in low- and middle-income countries where folic acid supplementation and fortification programs are less widespread.

Since the introduction of folic acid fortification in the U.S., the prevalence of spina bifida has dropped by about 28 to 35 percent. This is one of the clearest examples of a public health intervention preventing birth defects on a large scale.

Diagnosis

Prenatal Diagnosis

Most cases of spina bifida are now detected before birth. During routine prenatal care, several tests can identify the condition:

Maternal serum alpha-fetoprotein (MSAFP) screening measures the level of a protein in the mother’s blood. Elevated levels may suggest a neural tube defect.
Ultrasound is the primary tool for visualizing the developing baby. High-resolution imaging can often show an opening in the spine or other signs of spina bifida.
Fetal MRI may be used if ultrasound results are unclear or more detail is needed.

These tests allow parents and medical teams to prepare for delivery and plan for immediate postnatal care or, in some cases, consider fetal surgery.

Diagnosis at Birth

In cases where prenatal testing was limited or the condition was not detected, spina bifida is usually obvious at birth, particularly with myelomeningocele. A visible sac or opening on the baby’s back is typically present. Milder forms, such as spina bifida occulta, may not be noticed until later in life, or may be discovered incidentally during imaging for another reason.

Prevention

The most effective way to reduce the risk of spina bifida is through adequate folic acid intake.

Folic Acid Supplementation

All women of childbearing age should take 400 micrograms (mcg) of folic acid daily, even if they are not planning to become pregnant. Because the neural tube closes so early in pregnancy, it is critical that folic acid levels are sufficient before conception.

Women who have previously had a pregnancy affected by spina bifida, or who have a family history of neural tube defects, should take a higher dose of 4,000 mcg (4 mg) daily, under the guidance of their healthcare provider.

Folic acid is found in fortified cereals, bread, pasta, leafy green vegetables, citrus fruits, and beans. However, it can be difficult to get enough through diet alone, which is why supplementation is strongly recommended.

Other Preventive Measures

Women with diabetes should work with their healthcare team to manage blood sugar levels before and during pregnancy. Those taking medications for seizures or other conditions should discuss the risks and benefits with their doctor, as some medications can be adjusted or alternatives considered.

Avoiding excessive heat exposure, such as prolonged time in hot tubs or saunas, and treating fevers promptly during early pregnancy are also recommended precautions.

Medical Care and Treatment

Children with spina bifida benefit from coordinated, lifelong care involving multiple specialists. The type and intensity of treatment depend on the severity of the condition.

Surgery

Most babies with myelomeningocele require surgery within the first 24 to 48 hours of life to close the opening in the spine. This helps protect the spinal cord and nerves from further damage and reduces the risk of infection.

In select cases, fetal surgery can be performed while the baby is still in the womb. This procedure, typically done between 19 and 26 weeks of pregnancy, involves opening the uterus and repairing the spinal defect before birth. Research has shown that prenatal surgery can reduce the need for shunts to treat hydrocephalus and improve mobility outcomes, though it carries risks for both mother and baby. Not all families or pregnancies are candidates for fetal surgery, and the decision is made carefully with a specialized medical team.

Managing Hydrocephalus

Many children with myelomeningocele develop hydrocephalus, a condition in which cerebrospinal fluid builds up in the brain. This is usually treated by surgically placing a shunt, a thin tube that drains excess fluid into the abdomen where it can be absorbed by the body. Shunts require monitoring throughout life, as they can become blocked or infected and may need to be replaced or revised.

An alternative procedure called endoscopic third ventriculostomy may be appropriate for some children. This involves creating a new pathway for fluid drainage within the brain.

Bladder and Bowel Management

Damage to the nerves that control the bladder and bowels is common in children with myelomeningocele. This can lead to incontinence, urinary tract infections, and kidney problems if not managed properly.

Treatment may include:

Clean intermittent catheterization to empty the bladder regularly
Medications to help the bladder store and release urine
Bowel management programs involving diet, scheduled toileting, and sometimes enemas or medications
Surgical procedures in some cases to improve function or create alternative drainage routes

Ongoing monitoring with urology and gastroenterology specialists helps prevent long-term complications.

Mobility and Physical Development

Many children with spina bifida have some degree of muscle weakness or paralysis in their legs. Physical therapy, occupational therapy, and adaptive equipment play a vital role in promoting mobility and independence.

Depending on the level and severity of the spinal defect, a child may:

Walk independently
Walk with the help of braces, crutches, or walkers
Use a wheelchair for longer distances or full-time

Orthopedic care is also important to address issues such as scoliosis, hip dislocation, and foot deformities like clubfoot. Some children benefit from surgery or bracing to support proper alignment and function.

Multidisciplinary Care

Because spina bifida affects so many body systems, children do best when cared for by a team that includes neurosurgeons, urologists, orthopedic surgeons, physical and occupational therapists, developmental specialists, and care coordinators.

In New York, several centers provide comprehensive, accredited spina bifida care, including Mount Sinai, NYU Langone, Columbia Presbyterian, Albany Medical Center, and the Upstate Spina Bifida Center. These programs offer coordinated services, family education, and long-term follow-up to help children reach their full potential.

Long-Term Outlook

The majority of children born with myelomeningocele today can expect to live into adulthood. More than 75 percent reach adulthood with appropriate medical care and support. However, spina bifida is a lifelong condition, and individuals often face ongoing medical challenges.

Common issues that may arise over time include:

Shunt malfunction or infection
Tethered cord syndrome, where the spinal cord becomes attached to surrounding tissue and causes new or worsening symptoms
Scoliosis and other skeletal changes
Latex allergy, which is more common in people with spina bifida
Seizures
Kidney or bladder complications
Skin breakdown or pressure sores, especially in those who use wheelchairs

Early and consistent care, along with proactive monitoring, can help prevent or address many of these complications. Quality of life, independence, and participation in school, work, and community life are realistic goals for many people with spina bifida.

Support for Families

Raising a child with spina bifida can feel overwhelming, especially in the early days and months. Families often benefit from connecting with others who understand the experience, as well as accessing educational resources and care coordination services.

In New York, organizations such as the Spina Bifida Association of New York State provide peer support, education, advocacy, and connections to local services. Many hospitals with spina bifida programs also offer family support groups, transition planning for adolescents moving into adult care, and assistance with accessing adaptive equipment and community resources.

At nybirthinjury.com, we aim to provide families with trustworthy information and help connect them with qualified medical and support resources to navigate their child’s care with confidence.

Advances in Research and Care

Medical understanding of spina bifida has improved significantly over the past few decades. Fetal surgery is now an option for some families, and outcomes continue to improve as surgical techniques and care protocols advance.

Current research is focused on understanding the genetic and environmental factors that contribute to spina bifida, improving neurodevelopmental outcomes, preventing complications like latex allergy, supporting smooth transitions from pediatric to adult care, and promoting inclusive education and employment opportunities.

These efforts reflect a broader shift toward viewing spina bifida not only as a medical condition to be managed, but as part of a person’s identity, with a focus on maximizing independence, participation, and quality of life.

Moving Forward After a Spina Bifida Diagnosis

Spina bifida is a complex condition, but it is also one that many families learn to navigate with time, support, and access to good medical care. Every child is different, and outcomes depend on many factors, including the type and severity of spina bifida, the timing and quality of treatment, and the resources available to the family.

Understanding the condition, knowing what to expect, and connecting with knowledgeable providers and supportive communities can make a meaningful difference. Whether your child was recently diagnosed or you are seeking more information to better understand their care, you are not alone. Resources, answers, and compassionate support are available.

Spina Bifida