Spina bifida is a birth condition in which the spine and spinal cord do not form fully during early pregnancy. It is usually recognized before birth or at birth, and its effects can last for life. Signs of spina bifida can include weakness in the legs, trouble walking, changes in bladder or bowel control, and learning or brain-related problems in some children. Not everyone will have the same experience, and treatment often includes surgery, physical therapy, mobility support, and ongoing bladder or bowel care. Some forms are mild, while more severe spina bifida can lead to serious complications and can affect life expectancy, though many people live into adulthood with modern care.
How many people live with Spina bifida?
Worldwide, there is no single recent, trusted count of how many people are living with spina bifida, and estimates can differ because countries track cases in different ways. In the United States, about 166,000 people are estimated to be living with spina bifida (Spina Bifida Association, 2024).
Overview
Spina bifidaSymptoms
Spina bifida can affect movement, bladder or bowel control, and feeling in the legs or feet. Signs vary widely, from a small back dimple to weakness, foot changes, or hydrocephalus, and are often noticed before birth or at birth.
Outlook and prognosis
The outlook for spina bifida varies by type and severity, but many people live into adulthood and attend school, work, and family life. Prognosis is often better when hydrocephalus, mobility needs, bladder and bowel issues, and skin problems are treated early.
Causes and risk factors
Spina bifida usually develops very early in pregnancy when the neural tube does not close fully. Risk is higher with low folate, certain anti-seizure medicines, poorly controlled diabetes, obesity, high body temperature early in pregnancy, and sometimes inherited genetic susceptibility.
Genetic influences
Genetics matter in spina bifida, but they are only part of the picture. Many cases likely result from several gene changes working together with factors like low folate before and early in pregnancy.
Diagnosis
Diagnosis of spina bifida often starts during pregnancy with ultrasound and maternal blood tests. After birth, doctors may recognize typical clinical features. Imaging, such as MRI or CT scans, helps confirm the diagnosis and define the type.
Treatment and drugs
Treatment for spina bifida depends on the type and each person’s needs. Care often includes surgery to protect the spine, physical therapy, mobility aids, and regular bladder and bowel treatment. Many living with spina bifida also benefit from ongoing follow-up with several specialists.
Symptoms
Spina bifida can affect movement, feeling, bladder and bowel control, and sometimes learning, but the pattern depends a lot on the type and where the spine is affected. The early features of spina bifida may be clear at birth, such as a sac or opening on the back, or much subtler, such as a small skin mark over the spine. Features vary from person to person and can change over time. Some people with milder spina bifida have few day-to-day problems, while others need ongoing support with mobility and personal care.
In more severe spina bifida, there may be a visible sac, opening, or thin-covered area over the spine at birth. In milder forms, the only clue may be a small dimple, patch of hair, birthmark, or soft lump on the lower back.
Many people with spina bifida have weakness in one or both legs, and some cannot move the legs fully. Day to day, this can affect crawling, standing, walking, balance, and how much support or equipment is needed.
Feeling may be decreased below the level of the spinal problem, especially in the feet and legs. This can make cuts, burns, blisters, or pressure sores easier to miss.
Spina bifida can cause feet to turn inward or downward, tight joints, hip problems, or a curved spine. For many, this can mean trouble with shoe fit, posture, and comfortable movement.
How people usually first notice Spina bifida?
Spina bifida is often first noticed during pregnancy, when a routine ultrasound shows changes in the spine or brain, or when prenatal blood tests suggest a higher chance of an open neural tube defect. After birth, the first signs of spina bifida may include a visible opening or sac on the back, a patch of hair, a small dimple, or a fatty lump over the spine, although some milder forms are not obvious right away. In babies and young children, doctors and families may also first notice weakness in the legs, foot changes, bladder or bowel problems, or delayed motor milestones, depending on the type and severity.
Types of Spina bifida
Spina bifida can affect daily life in very different ways, from no obvious problems at all to weakness, bladder issues, or trouble walking. In medical terms, the main variants of spina bifida are defined by how much of the spinal tissue and its coverings are involved at birth. Symptoms don’t always look the same for everyone. Some of the types of spina bifida are found only after a scan, while others are clear right away in a newborn exam.
Occulta
This is the mildest form and often causes no symptoms at all. Many people with spina bifida occulta do not know they have it unless it is seen on an X-ray or MRI. When symptoms do happen, they may include back pain, leg weakness, or bladder problems.
Meningocele
In this type, a fluid-filled sac pushes out through an opening in the spine, but the spinal cord stays in place. Symptoms are often milder than in myelomeningocele, and some children have little or no nerve damage. Others may still have weakness, bowel or bladder trouble, or problems that need surgery and follow-up care.
Myelomeningocele
This is the most severe common form of spina bifida, with the spinal cord and nerves developing outside the usual protected space. Many living with myelomeningocele have leg weakness or paralysis below the level of the opening, along with bowel and bladder problems. Some also develop hydrocephalus, learning differences, or orthopedic problems, and the balance of symptoms can shift over time.
Can I slow down the onset of symptoms?
No, not in the usual sense: there is no proven way to delay the start of spina bifida symptoms, because spina bifida develops very early in pregnancy, before birth. Healthy habits and regular medical care can help manage problems and protect day-to-day function, but they do not prevent the condition or undo it once it is there; if you are planning a future pregnancy, taking folic acid before conception and in early pregnancy is a well-established way to lower the chance of spina bifida in a baby. While that cannot change spina bifida that is already present, early support and follow-up can still make a meaningful difference in daily life.
What genetics can tell you about symptoms
Genetics can help explain why spina bifida happens in some pregnancies and may partly affect how severe it is, but they usually cannot predict exactly which symptoms someone will have day to day. Many living with spina bifida have a mix of challenges that depends a lot on where the spinal opening formed and how much the nerves were affected, so symptoms can range from few problems to weakness, bladder or bowel issues, or trouble walking. Researchers think common genetic differences, along with factors such as folate levels and other pregnancy exposures, may influence risk and possibly severity, but genetics alone does not reliably tell when symptoms will begin or how strongly they will affect someone.
Causes and risk factors
For many families, spina bifida can feel confusing because it usually does not come from one single cause. Genes can raise the chance, and a family history of neural tube defects can matter. It is rarely just one factor, and the mix matters. Some of the main risk factors for spina bifida are low folate before and during early pregnancy, diabetes, obesity, some seizure medicines, and high body temperature early in pregnancy. Taking folic acid before pregnancy and in the first weeks after conception can lower the chance of spina bifida, but it cannot prevent every case.
What are the most common causes or risk factors?
Spina bifida happens very early in pregnancy, when the baby’s spine does not close all the way, and in many cases there is not one single clear cause. The best-known risk factors are not getting enough folic acid before pregnancy and in the first weeks of pregnancy, having a family history of spina bifida or a previous pregnancy affected by it, and taking some seizure medicines during pregnancy. Poorly controlled diabetes and obesity in the mother can also raise the risk.
Environmental and biological risk factors
Spina bifida starts very early in pregnancy, when the tissue that forms the brain and spine does not close fully. Many of the main risk factors are present before someone even knows they are pregnant, which is why the causes of spina bifida in babies are often discussed in terms of early pregnancy exposures and body-based health factors. Doctors often group risks into internal (biological) and external (environmental).
Not having enough folate in the body before conception and during the first weeks of pregnancy is one of the clearest risk factors for spina bifida. This can happen because intake is low, the body does not absorb it well, or a medicine lowers folate levels.
Low vitamin B12 may also raise the chance of the spine not forming normally, especially when folate is low at the same time. This is a biological risk factor because the embryo depends on these vitamins very early on.
Diabetes present before pregnancy, especially when blood sugar is high in the earliest weeks, increases the risk of certain birth differences affecting the spine. The risk comes from the body environment around the developing embryo, often before pregnancy is recognized.
A high fever or repeated overheating in very early pregnancy can increase the chance of spinal opening defects. This includes heat from illness and, in some cases, frequent exposure to very hot tubs or saunas.
Genetic risk factors
For most families, the genetic side of spina bifida is complex rather than simple. Several genes are thought to influence risk, and most people with spina bifida do not have one single inherited change that fully explains it. Family history matters, especially if a parent, sibling, or previous child has been affected. A small number of cases happen as part of a broader genetic syndrome or chromosome difference.
Family history: Spina bifida is more likely in families where a parent, brother, sister, or close relative has also had a neural tube defect. This higher risk suggests inherited genetic factors are involved, even though no single gene explains most cases.
Previous pregnancy: If someone has had one pregnancy affected by spina bifida, the chance of it happening again is higher than average in a future pregnancy. This pattern points to shared inherited factors, and the chance can rise further after more than one affected pregnancy.
Multiple genes: When people ask about the genetic causes of spina bifida, the answer is usually that several genes each add a small part to risk. These genes are thought to affect how the neural tube forms and closes very early in pregnancy.
Rare syndromes: A small number of babies develop spina bifida as part of a genetic syndrome or a chromosome difference. In these cases, spina bifida appears alongside other birth differences, and genetic testing may help clarify the cause.
Lifestyle risk factors
Spina bifida is present from birth, so lifestyle habits do not cause it. However, how lifestyle affects spina bifida can be important for mobility, skin health, bladder and bowel function, weight control, and the risk of complications. The most helpful habits are the ones that support daily function and reduce added strain on the spine, joints, and nerves.
Regular, adapted exercise can help maintain strength, endurance, balance, and joint mobility in people with spina bifida. It may improve transfers, wheelchair skills, walking efficiency, and overall independence while lowering the risk of deconditioning.
Excess weight can place extra stress on the spine, hips, knees, and feet, which may worsen pain and make mobility more difficult with spina bifida. Weight gain can also increase the risk of skin breakdown and make bracing, transfers, and self-care harder.
Long periods of pressure, limited position changes, or poor daily skin checks can raise the chance of pressure injuries in areas with reduced sensation. Careful repositioning, routine inspection, and well-fitted seating or braces can help prevent ulcers and infection.
Irregular catheterization, low fluid intake, or poor urinary habits can increase the risk of urinary retention, infections, and kidney complications in spina bifida. Consistent bladder routines and good hydration can support safer urinary tract function.
Risk prevention
Spina bifida usually develops very early in pregnancy, often before someone knows they are pregnant, so prevention focuses mainly on steps taken before conception and in the first weeks after. Taking folic acid every day before pregnancy and during early pregnancy is the most important proven way to lower the chance of spina bifida, although it cannot prevent every case. Some prevention is universal, others are tailored to people with specific risks. For families already living with spina bifida, prevention also means reducing complications through regular care and healthy routines.
Taking folic acid before conception and through early pregnancy can greatly reduce the risk of spina bifida. Because the spine forms in the first month of pregnancy, daily folic acid matters even before a positive pregnancy test.
Some people need a higher folic acid dose, especially if they had a previous pregnancy affected by spina bifida or take certain anti-seizure medicines. A doctor can advise the safest dose and timing before trying to conceive.
Certain medicines can raise the risk of birth defects, so it helps to review all prescription drugs, supplements, and over-the-counter products before pregnancy. This is especially important for seizure medicines and other drugs that affect folate levels.
Poorly controlled diabetes before and during early pregnancy can increase the risk of spina bifida and other birth differences. Keeping blood sugar in target range before conception can help lower that risk.
Can you prevent Spina bifida?
Not all cases of spina bifida can be prevented, but the chance can often be lowered. The best-proven step is getting enough folic acid, a B vitamin, before pregnancy and during the first weeks of pregnancy, because the spine forms very early. If you have diabetes, keeping blood sugar under good control before pregnancy may also help, but some babies still develop spina bifida even when parents do everything right.
Transmission
Spina bifida is not infectious, so it cannot be caught from another person through contact, the air, or sex. When people ask how spina bifida is inherited, the short answer is that most cases do not follow a simple parent-to-child pattern like some single-gene conditions do.
Instead, spina bifida usually happens because of a mix of inherited risk and early pregnancy factors, and many families have no prior history at all. The chance can be higher if a parent has spina bifida or if there has been a previous pregnancy affected by spina bifida or a related neural tube defect, but this does not mean it will definitely happen again.
When to test your genes
For spina bifida, genetic testing is not usually the main tool for early detection; prenatal ultrasound and maternal blood screening are used more often. Genetic counseling, and sometimes targeted testing, may help if there is a family history, repeated affected pregnancies, or features suggesting a broader genetic syndrome.
Diagnosis
Spina bifida is often suspected before birth or soon after delivery, because changes in the spine, brain, or skin can show up on routine exams. The exact diagnosis depends on the type and how much the spinal cord and nearby tissues are affected. Doctors usually begin with imaging and a physical exam, then use other tests to confirm the diagnosis of spina bifida and look for related problems such as fluid buildup in the brain. Some forms are obvious at birth, while milder forms may not be found until later in childhood or even adulthood.
During pregnancy, ultrasound can often show signs of spina bifida, especially the more open forms. It may reveal changes in the spine as well as clues in the brain that suggest the spinal cord has not developed normally.
A blood test during pregnancy may show a higher level of alpha-fetoprotein, which can be a clue that the baby has an open spinal defect. This result is not enough to diagnose spina bifida on its own, so it is usually followed by imaging or other tests.
If ultrasound findings are unclear or doctors need more detail, fetal MRI can give a closer look at the spine and brain before birth. This can help confirm the extent of the spinal opening and support planning for delivery and early care.
After birth, many babies with spina bifida are diagnosed by looking for visible changes in the back, such as a sac, an open area, or a patch of skin with unusual findings. The exam also checks leg movement, reflexes, and bowel or bladder function.
How is Spina bifida diagnosed?
Spina bifida is often found before birth during routine pregnancy care, usually with an ultrasound scan and sometimes a maternal blood test that looks for signs that the baby's spine is not forming normally; in some cases, doctors may also test a small sample of the fluid around the baby. If it is found after birth, doctors usually diagnose it by examining the baby's back, leg movement, and reflexes, then confirming it with imaging tests such as ultrasound, X-ray, or MRI. Genetic testing is not usually the main way spina bifida is diagnosed, but it may be considered if doctors think there could also be another inherited condition.
Stages of Spina bifida
Spina bifida does not have defined progression stages. That is because it is a condition present from early development before birth, not an illness that usually moves step by step from mild to severe over time. Different tests may be suggested to help confirm it, and many people learn about spina bifida during pregnancy through ultrasound and blood tests, while others are diagnosed after birth with a physical exam and imaging such as ultrasound or MRI. Follow-up usually focuses on checking how the spine, legs, bladder, and bowel are working, since the effects can vary widely from one person to another and can shape the early symptoms of spina bifida.
Outlook and prognosis
Outlook in spina bifida varies widely with the type and severity of the defect, the level of spinal involvement, and whether complications such as hydrocephalus, Chiari II malformation, bladder and bowel dysfunction, or recurrent infections occur. People with spina bifida occulta often have a normal lifespan with few or no symptoms, while those with myelomeningocele are more likely to have lifelong mobility, orthopedic, urologic, and neurologic challenges that require ongoing multidisciplinary care. Survival has improved markedly with modern neurosurgical, urologic, rehabilitation, and preventive care, and many affected children now live well into adulthood. Mortality is highest in the most severe forms and is most often related to complications such as brainstem dysfunction, shunt problems, severe infection, renal disease, or respiratory issues. Long-term quality of life can be good, especially when treatment begins early and families receive coordinated support, although degree of independence varies from person to person.
Long-term effects
The long-term effects of spina bifida can look very different from one person to another, depending on the type, the level of the spinal opening, and whether the brain is also affected. Long-term effects vary widely, from mild leg weakness to ongoing bladder, bowel, mobility, or learning challenges that shape daily life over many years. For many living with spina bifida, these effects may change with age, so childhood, adolescence, and adulthood do not always look the same.
Many people with spina bifida have lasting weakness, tight muscles, or balance problems that affect walking and stamina. Some use braces, crutches, or wheelchairs, and bone or joint changes can become more noticeable over time.
Nerve changes often affect how the bladder stores and empties urine, which can lead to leakage, incomplete emptying, or repeated urinary infections. Over the years, poorly controlled bladder problems can also strain the kidneys.
Long-term bowel effects can include constipation, loss of bowel control, or difficulty emptying fully. For many, this can mean planning daily routines around bathroom access and timing.
In some people, especially those who also have extra fluid around the brain, long-term effects may include attention, planning, processing speed, or learning difficulties. Early symptoms of spina bifida may be physical, but school-age and adult challenges can sometimes be more noticeable in memory, organization, or problem-solving.
How is it to live with Spina bifida?
Living with spina bifida can look very different from one person to the next, but for many it means managing a mix of physical, bladder or bowel, and mobility challenges alongside school, work, friendships, and everyday routines. Some people walk independently, while others use braces, crutches, or a wheelchair, and many also need regular medical care, physical therapy, or help preventing skin injuries and infections. Life often involves extra planning for both the person and their family or caregivers, yet with the right support, accessibility, and medical follow-up, many people with spina bifida build active, independent, and deeply connected lives.
Treatment and drugs
Treatment for spina bifida depends on the type, how severe it is, and which parts of the body are affected. Some babies need surgery soon after birth to protect the spinal cord and lower the risk of infection, while many children and adults living with spina bifida also need ongoing care for bladder or bowel problems, leg weakness, foot changes, or skin sores. Treatment plans often combine several approaches, including physical therapy, mobility aids such as braces or wheelchairs, medicines to manage symptoms, and regular follow-up with specialists. For many people, this can mean a mix of daily routines at home and clinic visits over time, especially if early symptoms of spina bifida affect movement or bladder control. Not every treatment works the same way for every person, so care is usually tailored to age, symptoms, and day-to-day needs.
Can you cure Spina bifida?
No, spina bifida cannot be cured, because it happens before birth and the changes to the spine and nerves cannot be fully reversed. Treatment can still help a lot by protecting the spinal cord, treating related problems, and supporting movement, learning, and bladder or bowel control. Many people with spina bifida may have surgery before or after birth, along with physical therapy, braces or mobility aids, and regular care to help them stay as healthy and independent as possible.
Non-drug treatment
Living with spina bifida often means finding practical ways to move safely, protect the skin, and support bladder, bowel, and daily routines. Managing this condition often involves therapy, equipment, and home habits that help people stay as active and independent as possible. The best plan depends on age, mobility, and whether someone has related concerns such as weakness, hydrocephalus, or learning difficulties.
Physical therapy helps build strength, balance, and flexibility, and it can make transfers, walking, or wheelchair use easier. For many living with spina bifida, physical therapy for spina bifida often starts early and changes over time as needs change.
Occupational therapy focuses on daily tasks such as dressing, bathing, handwriting, cooking, and using tools at school or work. It can also suggest simpler ways to do tasks and equipment that saves energy and improves safety.
Braces, splints, walkers, crutches, and wheelchairs can improve posture, support weak joints, and help with mobility. The right equipment can reduce falls, lower strain on the body, and make day-to-day activities more manageable.
Bladder and bowel programs may include timed toilet visits, pelvic floor support, catheter routines, and planning fluids and fiber with the care team. These steps can help prevent leaks, constipation, and infections, which are common challenges in spina bifida.
Your genes may have an impact on how drugs work for you
For people living with spina bifida, medicine response is usually shaped more by day-to-day health issues, such as kidney function, bladder problems, bowel care needs, past surgeries, and body size, than by inherited differences in genes. Even so, small genetic differences can sometimes affect how the body breaks down certain medicines, which may change how well a drug works or how likely side effects are, so one person may do well on a usual dose while another needs a change. This kind of gene-and-medicine matching is called pharmacogenomics, but it is not a routine part of care for most people with spina bifida, and treatment is usually tailored by watching symptoms, side effects, and test results over time.
Pharmacological treatments
Treatment for spina bifida often focuses on the day-to-day issues that come with it, such as bladder leaks, constipation, pain, muscle tightness, or infections. There is no medicine that closes the opening in the spine, but drugs can help manage complications and improve comfort and independence. Not everyone responds to the same medication in the same way, so treatment is usually tailored to age, symptoms, and any related nerve or kidney problems. Many living with spina bifida use a mix of medicines over time, sometimes along with catheters, physical therapy, or surgery.
Oxybutynin, tolterodine, and solifenacin are often used to relax an overactive bladder and help reduce leaking. These are some of the most common medications for bladder problems in spina bifida, especially when bladder nerves do not signal normally.
OnabotulinumtoxinA, often called Botox, may be injected into the bladder when standard bladder medicines do not help enough. It can lower pressure inside the bladder and may help protect the kidneys as well as improve continence.
Polyethylene glycol, lactulose, senna, and bisacodyl are commonly used when bowel movements are hard, infrequent, or difficult to control. Some medicines soften stool, while others help the bowel push stool along more effectively.
Acetaminophen or ibuprofen may help with mild pain, while gabapentin, pregabalin, duloxetine, or amitriptyline may be used for nerve-related pain. If one option is not effective, doctors may adjust the dose or switch medicines based on side effects and how much relief you get.
Genetic influences
Spina bifida usually does not come from a single inherited gene change. Instead, it is thought to develop from a mix of genetic susceptibility and non-genetic factors, including genes that affect how the body uses folate, a B vitamin that matters very early in pregnancy. If you have had a pregnancy affected by spina bifida, or close relatives have, the chance of spina bifida is higher in a future pregnancy than it is for the general population. Family history is one of the strongest clues to a genetic influence. Even so, many babies with spina bifida are born into families with no known history, so genetics is only part of the picture. For families with repeated cases or other birth differences, genetic counseling can help review the pattern and discuss whether testing is likely to add useful information.
Is Spina bifida genetic?
Genetics matter in spina bifida, but they are only part of the picture. Many cases likely result from several gene changes working together with factors like low folate before and early in pregnancy.
Having a genetic risk is not necessarily a diagnosis
Genetic variants are a usual part of being human and are widely found in the general population. Most do not have any direct effect on health and are simply part of normal human diversity. For many genes, having a variant associated with a condition suggests a possible link rather than a definite diagnosis, especially when several genes and environmental factors are involved. In some situations, though, a single well-characterized variant in a particular gene can be enough to confirm a diagnosis.
Pharmacogenetics—how genetics influence drug effects
Treatment for spina bifida is usually guided more by the problems a child or adult is having day to day than by a specific gene result. For many living with spina bifida, this can mean surgery to close the opening, care for hydrocephalus, and ongoing help with mobility, bladder, bowel, skin, and pain symptoms. Genetics can still matter, because some people with spina bifida also have other inherited differences or related health issues that can affect care planning and follow-up. Genetics is only one factor, though, and pharmacogenetic testing is not a routine part of choosing medications used to treat spina bifida symptoms. In some situations, if someone has unusual side effects or poor benefit from medicines such as pain relievers or drugs for bladder control, doctors may consider whether inherited differences in drug processing could play a role. So while genes are important in understanding why spina bifida happens, they usually have a limited direct role in standard spina bifida treatment.
Interactions with other conditions
People living with spina bifida often manage more than the spinal condition itself, because it can affect the bladder, bowel, legs, and brain in ways that raise the chance of other health problems. Common related conditions include urinary tract infections, kidney damage from long-term bladder problems, constipation, pressure sores, and joint or bone issues from reduced movement or muscle weakness. Some people with spina bifida also develop hydrocephalus, a buildup of fluid in the brain, and this may be linked with headaches, vision changes, or problems with balance and learning. Another important aspect is how it may link with other diseases. Because limited mobility can make exercise harder, many living with spina bifida may also face obesity, sleep apnea, or low bone density over time. Mental health matters too, since ongoing pain, repeated medical care, or loss of independence can increase the risk of anxiety or depression, so changes in mood deserve attention just as much as physical symptoms.
How genes can cause diseases
Humans have more than 20,000 genes, each carrying out one or a few specific functions in the body. One gene instructs the body to digest lactose from milk, another tells the body how to build strong bones and another prevents the body's cells from beginning to multiply uncontrollably and developing into cancer. As all of these genes combined are the building instructions for our body, a defect in one of these genes can have severe health consequences.
Through decades of genetic research, we know the genetic code of any healthy/functional human gene. We have also identified that in certain positions on a gene, some individuals may have a different genetic letter from the one you have. We call these hotspots "Genetic Variations" or "Variants" in short. In many cases, studies have been able to show that having the genetic letter "G" in the position makes you healthy, but having the letter "A" in the same position disrupts the gene function and causes a disease. Genopedia allows you to view these variants in genes and summarizes all that we know from scientific research, which genetic letters (Genotype) have good or bad consequences on your health or on your traits.
What other conditions can cause similar symptoms to Spina bifida?
Some symptoms of spina bifida, like leg weakness, trouble walking, back pain, or bladder and bowel problems, can also happen with cerebral palsy, muscular dystrophy, or a tethered cord, where the spinal cord is pulled too tightly. Other spinal cord problems, including an injury, an infection, or a growth pressing on the nerves, can look similar too. Because these signs can overlap, doctors usually use an exam and imaging tests to tell them apart.
History
Long before scans in pregnancy or modern surgery, families and doctors noticed that some babies were born with changes in the spine and spinal cord that could affect movement, bladder or bowel control, and sometimes learning or fluid around the brain. These differences are now grouped under the name spina bifida, but older descriptions were often incomplete because medicine had only the visible signs to go on.
Since the earliest days of medicine, efforts have been made to understand these spinal differences. Early medical writings described babies born with openings along the back, though doctors did not yet understand how the spine forms in early pregnancy. By the 1800s and early 1900s, pathologists and surgeons began to describe different forms of spina bifida more clearly, including milder types that may go unnoticed for years and more severe types seen at birth.
The biggest changes came in the 20th century. As medical science evolved, doctors improved care for hydrocephalus, a buildup of fluid in the brain that can happen with some forms of spina bifida, and surgery became safer for newborns. Prenatal ultrasound later made it possible to detect many cases before birth, which helped families and care teams plan delivery and treatment. Researchers also learned that spina bifida develops very early in pregnancy, when the tissues that form the brain and spinal cord do not close completely.
In recent decades, the history of spina bifida has also been shaped by prevention. Strong evidence showed that getting enough folate, also called folic acid, before pregnancy and in early pregnancy lowers the chance of neural tube defects, including many cases of spina bifida. This led to public health campaigns and, in some countries, folic acid being added to staple foods. Even so, spina bifida has not disappeared, and it can still happen for several reasons.
Today, people living with spina bifida often benefit from care that would not have been possible in the past, including earlier diagnosis, rehabilitation, and lifelong support. Early symptoms of spina bifida can vary widely depending on the type, and that variability is one reason older reports were so mixed. Looking back at this history helps explain why spina bifida is now understood as a lifelong condition with a wide range of experiences, rather than a single, uniform disorder.