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Spina Bifida

Spina bifida is a birth condition in which the spine and spinal cord do not fully form. It ranges from a hidden gap that never causes problems to a serious form that affects walking, bladder, bowel and fluid around the brain. Know the warning signs of a blocked or infected shunt, then learn how a specialist team, daily self-care and planning for each life stage help people live full lives.

Call 911 or go to the nearest emergency room for the signs below. Do not wait for a regular appointment, and do not try a home remedy first.

  • Signs that a shunt (the tube that drains fluid from the brain) may be blocked or infected. NINDS lists headache, double vision or sensitivity to light, nausea or vomiting, soreness of the neck or shoulder muscles, seizures, redness or tenderness along the shunt, low-grade fever, sleepiness or exhaustion, and the return of the original hydrocephalus symptoms, and says to seek medical help immediately (NINDS). In babies, hydrocephalus can show as a rapid increase in head size, a bulge on the soft spot, vomiting, feeding problems, sleepiness, irritability, eyes fixed downward, or seizures (NINDS). The NHS says a blocked shunt needs emergency surgery to replace it, and a shunt infection can bring redness along the shunt, a high temperature, headache, vomiting, neck stiffness, tummy pain, or irritability or sleepiness in babies (NHS).
  • A serious allergic reaction to latex — trouble breathing, wheezing, swelling of the lips, tongue or throat, a weak pulse, fainting, or vomiting after contact with a glove, catheter, balloon or similar item (MedlinePlus). Reactions can start in minutes and, rarely, become anaphylaxis (MedlinePlus). Call 911, and give an epinephrine auto-injector right away if one has been prescribed (MedlinePlus).

Get medical care the same day for:

  • New or worsening back pain, leg or foot weakness, or a change in bladder or bowel control. These can be signs of a tethered spinal cord, which can be treated with surgery (CDC).
  • Signs of a urinary tract infection or kidney infection: fever, shakiness, cloudy or bad-smelling urine, or pain in the back or side below the ribs (MedlinePlus). The NHS warns that a kidney infection can be serious if it is not treated, because it could cause sepsis (NHS).
  • A skin sore that is not healing, or one that is hot, swollen or red, has pus, or comes with a high temperature or worsening pain (NHS). With reduced feeling a person may not notice sores, bruises or cuts (CDC), so look every day.

What is spina bifida?

Spina bifida is a birth condition that affects the spine. It happens when the neural tube — the early structure that becomes the brain and spinal cord — does not form properly or close fully, so the protective backbone does not form and close either, which often damages the spinal cord and nerves. CDC says the condition can occur anywhere along the spine, ranges from mild to severe, and is usually apparent at birth (CDC). It is one of a group of neural tube defects that begin in the first month of pregnancy (NINDS, MedlinePlus).

No two people are the same. NINDS says each person has different abilities and health challenges, that there is no cure, and that most people with spina bifida lead long lives (NINDS). MedlinePlus adds that most people with spina bifida are of normal intelligence (MedlinePlus). In general, if the opening is lower on the back, there are fewer symptoms (NINDS).

The types

  • Myelomeningocele (open spina bifida) is the most serious type. A fluid-filled sac pushes out through an opening in the baby’s back, and the spinal cord and nerves in the sac are damaged, causing moderate to severe disabilities such as not being able to move the legs. It is the type people usually mean by “spina bifida” (CDC). Most people with it have changes in brain structure, leg weakness, and bladder and bowel problems (NINDS).
  • Meningocele is a sac of fluid through the back without the spinal cord inside it. There is usually little or no nerve damage, and it can cause minor disabilities (CDC, NINDS).
  • Spina bifida occulta (“hidden”) is the mildest type: a small gap in the spine with no opening or sac on the back, and the spinal cord and nerves are usually normal. It is often not discovered until late childhood or adulthood (CDC). NINDS calls it the mildest and most common type, usually without symptoms and often found by accident on an X-ray, and says people with it generally do not need treatment (NINDS).
  • Closed neural tube defects are a varied group in which the spine has abnormal fat, bone or protective layers over the cord. NINDS says many require surgery in childhood, and symptoms such as leg weakness or bowel and bladder trouble may change or worsen as a child grows (NINDS). The NHS groups these as “closed” types and notes that a hairy patch, fatty lump or deep dimple on the back may be a clue (NHS).

How common is it, and what causes it?

CDC estimates that about 1,278 babies are born with spina bifida in the United States each year, about 1 in every 2,857 births, and that Hispanic women have the highest rate of having a child with spina bifida (CDC). The exact cause is not fully known, and the roles of genes and environment need more study. Research has reported factors that might raise the chance: not getting enough folic acid every day, certain medicines, poorly controlled diabetes, and overheating or fever (CDC). NINDS adds that a parent with spina bifida, or a previous child with a neural tube defect, slightly raises the chance, and names valproate (an anti-seizure medicine also used for headaches and bipolar disorder) (NINDS). MedlinePlus lists obesity as well (MedlinePlus). Anyone taking a prescription medicine who may become pregnant should talk with their doctor before changing it — do not stop a medicine on your own.

Folic acid and prevention

Folic acid is the best-studied way to lower the chance of a neural tube defect. CDC says it is the only type of folate that studies have shown can help prevent them, that two large randomized trials in the 1990s found lower chances of a neural tube defect with folic acid before and during early pregnancy, and that these defects form in the first few weeks, often before a woman knows she is pregnant. That is why CDC advises all women who could become pregnant to get folic acid every day, and says women who have had a pregnancy affected by a neural tube defect should talk with their doctor first (CDC). NINDS says people who have spina bifida themselves, or who had a child with a neural tube defect, should consult a doctor about a higher prescribed amount (NINDS). We do not list doses here; your doctor will tailor them.

  • It lowers the chance; it does not guarantee. NINDS says folic acid cannot guarantee a healthy baby but helps reduce the risk (NINDS).
  • Food and vitamins. Folic acid is found in leafy green vegetables, fruits, dried beans, peas and nuts, and enriched breads, cereals and grain products, and most multivitamins contain it (MedlinePlus, MedlinePlus).
  • Fortification works. After the United States required folic acid in enriched cereal grain products starting in 1998, a CDC-led report estimated that about 1,326 births a year occur without a neural tube defect that otherwise would have had one, and noted room to improve prevention among women with lower folic acid intakes, especially Hispanic women (Williams et al., 2015).
  • Not anyone’s fault. NINDS says anyone can give birth to a baby with spina bifida (NINDS), and CDC says the causes are not fully known (CDC). Please do not blame yourself.

How it is found: during pregnancy and after birth

  • During pregnancy. A blood test called maternal serum AFP (alpha-fetoprotein), done around 16 to 18 weeks, can flag a higher chance, and ultrasound can accurately detect spina bifida, especially around 18 to 22 weeks; amniocentesis is another test (NINDS). In the U.S., most cases are diagnosed before birth (NINDS). The NHS says its 20-week scan checks for open spina bifida, and if it is suspected you are offered more tests and a talk with a doctor about what it means for your child (NHS).
  • After birth. Closed types may be noticed from a tuft of hair, a bubble of fatty tissue or a dimple on the back, and occulta is often found on an X-ray taken for another reason. MRI or CT can show the spinal cord more clearly, and a head scan can look for hydrocephalus (NINDS).

Surgery before birth

For some babies with open spina bifida, surgeons can close the opening while the baby is still in the womb. Surgery is usually done before 26 weeks of pregnancy (NHS). NINDS says it does not fix lost brain function but might stop further damage during the rest of the pregnancy, and that it has risks for both the baby and the mother (NINDS).

  • The main trial. The Management of Myelomeningocele Study (MOMS), funded by the National Institutes of Health, compared prenatal repair with standard postnatal repair in 183 women and was stopped early because prenatal surgery worked better. Shunts were placed in 40% of the prenatal group versus 82% of the postnatal group by age 12 months, and motor and mental development scores were better at 30 months. But prenatal surgery was associated with a higher risk of preterm delivery and uterine dehiscence at delivery (Adzick et al., 2011).
  • Later follow-up. At school age, the prenatal group more often walked without braces or devices (29% vs 11%, a gap just short of the usual statistical cutoff), had fewer shunts (49% vs 85%) and fewer shunt revisions, but there was no strong evidence of better thinking skills (Houtrow et al., 2020). The mobility benefits persisted at ages 5 to 10 (Houtrow et al., 2021). On bladder function, prenatal surgery did not significantly reduce the need for catheterization by 30 months, and the authors stressed long-term urology follow-up for everyone (Brock et al., 2015).
  • Risks and access. CDC describes it as a major procedure for both mother and baby that may not be available everywhere, reports risks such as placenta problems and infection, and recommends discussing the pros and cons with specialists (CDC, CDC). This is a decision for you and a fetal-surgery team.

Surgery after birth

Babies born with myelomeningocele or meningocele need surgery in the first days of life to close the opening and prevent infection (NINDS). The NHS says this is usually within 48 hours, that surgery will not reverse nerve damage but prevents more damage, and that closed types usually need no treatment although sometimes surgery is needed (NHS). Many babies then also need treatment for hydrocephalus, described below.

Not an emergency, but do not delay: everyone with spina bifida needs a primary care provider to track health, development and vaccines, plus specialists such as an orthopedist, urologist and neurosurgeon. Many children’s hospitals have multidisciplinary spina bifida clinics (CDC). Health issues differ for each person and change with age (CDC). Related MBHA guides: Cerebral Palsy, Spinal Cord Injury, Hypotonia and Developmental Disabilities.

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) A multidisciplinary spina bifida clinic: surgery to close the spine (before or after birth), a shunt or other treatment for hydrocephalus, surgery for tethered cord, bladder and bowel programs, physical and occupational therapy, braces and mobility aids, skin care, and lifelong follow-up. Hospital, surgery and clinic costs: cost estimate being researched. Medicare Part B covers medically necessary outpatient physical therapy and durable medical equipment such as walkers and wheelchairs: after the deductible you pay 20% of the Medicare-approved amount. There is no cure, but most people with spina bifida lead long lives. Surgery closes the spine and treats complications; it does not reverse existing nerve damage. Shunts often need repair or replacement over a lifetime.
Chiropractic Spinal and joint adjustment, sometimes with exercise. Not a treatment for spina bifida or its complications. About $55 to $100 for a self-pay follow-up visit and $90 to $200 for a first visit, per The Pricer. We found only single case reports, which cannot show that it works. Because of tethered cord, fragile bones and reduced feeling, any hands-on spinal care needs your spina bifida team’s approval first.
Acupuncture Fine needles at specific points, sometimes tried for bladder, bowel or pain problems. About $90 to $185 per follow-up visit paying cash, and $125 to $230 for a first private visit, per The Pricer. We found little research on acupuncture for spina bifida: one 1986 case series with no results shown in its abstract. Tell the practitioner about reduced feeling, a shunt and any latex allergy.
Herbal medicine No herb or supplement treats spina bifida. Folic acid is a vitamin used to lower the chance of a neural tube defect in a future pregnancy, not a treatment. Cost estimate being researched. A systematic review found evidence against cranberry for preventing urinary infections in adults with spina bifida. Check every product with your pharmacist or doctor.
Massage therapy Gentle hands-on work for muscle tightness, comfort and relaxation, by a therapist who knows about reduced feeling and skin fragility. One national chain: about $125 to $160 for a 60-minute massage for non-members and about $65 to $90 for members, per The Pricer. Prices vary by location. We found little research on massage for spina bifida. Skip areas with sores, and use a light touch where feeling is reduced and bones may be thin.
MBHA Wellness Coach Daily habits: skin checks, bladder and bowel routines, movement, healthy weight, sleep, mood, keeping appointments, and planning for school, work and the move to adult care. Cost estimate being researched. Supports — never replaces — your spina bifida clinic and the care plan it designs with you.

Approach 1 of 6

Conventional medicine (AMA)

Spina bifida care is team care. CDC advises a primary care provider plus specialists — orthopedists for muscles and bones, urologists for kidneys and bladder, and neurosurgeons for brain and spine — and notes that children’s hospitals often have multidisciplinary spina bifida clinics. People with more severe issues, especially open spina bifida, usually need more types of treatment (CDC). NINDS says people with myelomeningocele need close follow-up with doctors throughout life to function well and to prevent complications such as kidney failure (NINDS).

What the team treats

What it costs

  • Hospital stays, surgery, clinic visits, catheters and bowel supplies: cost estimate being researched.
  • Medicare: Part B helps pay for medically necessary outpatient physical therapy, with no yearly limit; after the Part B deductible you pay 20% of the Medicare-approved amount (Medicare.gov). It also covers medically necessary durable medical equipment — including crutches, walkers and wheelchairs — at the same 20% after the deductible, from suppliers enrolled in Medicare (Medicare.gov). Many children are covered by other programs; ask your clinic’s social worker.

What to expect

Treatment depends on the type (NINDS). The NHS says most people born with open spina bifida live to be adults and can live full lives, though they may need support to move around and to manage everyday life and symptoms (NHS).

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic care does not treat spina bifida or its complications, and we found no trial showing that it does. Some families ask about it for back pain, bladder or bowel control, or posture, so here is what exists.

What the research says

  • Case reports only. One chiropractor described a 5-year-old boy who had had surgery for a lumbar meningocele, spinal lipoma and tethered cord and had no bladder or bowel control; after two short courses of treatment with an adjusting instrument and shortwave diathermy, the author reported satisfactory control. It is a single child treated by the author, so it cannot show that the treatment caused the change (Kamrath, 2010). Another report followed a 10-year-old with low back pain after a fall who was found to have spina bifida occulta by chance; his pain resolved after six visits of manipulation with no adverse effects reported (Cofano et al., 2014).
  • Imaging matters. A chiropractic-journal case report described a woman with 6 months of back and leg pain and numbness whose X-rays were normal but whose MRI showed a tethered spinal cord, treated by surgery. The authors pointed out that MRI can help when a patient is not responding to chiropractic care (Marchiori & Firth, 1996).

Safety

NCCIH says serious problems from spinal manipulation, including spinal or neurological injury and strokes from tears in neck arteries, are very rare, with no accurate estimate of how often they occur, and that the chance may be greater in people with underlying health problems (NCCIH). For spina bifida, MBHA suggests extra caution because of facts from other sources: people with myelomeningocele can have tethered cord and low bone mineral density (NINDS), and scoliosis can be a symptom (CDC, NHS), and reduced feeling can hide pain (CDC). Please ask your spina bifida clinic before any adjustment, tell the chiropractor about any shunt, surgery or latex allergy, and do not accept treatment aimed at “curing” spina bifida. For ordinary back pain in someone without these concerns, see our Back Pain and Scoliosis guides.

What it costs

The Pricer lists about $55 to $100 for a self-pay follow-up visit and about $90 to $200 for a first visit (The Pricer).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

Acupuncture uses very fine needles at specific points on the body. We found little research on acupuncture for spina bifida.

What the research says

  • The only item we found was a 1986 Chinese journal report of 254 cases of urination and bowel problems from a sacral spinal defect treated with acupuncture. Its PubMed record has no abstract, so we could not read its results and make no claim about them (An et al., 1986).
  • Our PubMed search for acupuncture and spina bifida turned up that case series, a few other case reports, and results about other conditions. Searches on acupuncture for nerve-related bladder problems mostly listed studies of other causes, such as spinal cord injury or stroke; we did not read them and do not apply them here. Overall, we found little research.

Safety

Relatively few complications are reported, and those that have occurred came from non-sterile needles and improper treatment; the FDA requires acupuncture needles to be sterile and single-use (NCCIH). MBHA suggests telling the practitioner about reduced feeling (so skin problems are not missed), any shunt, and any latex allergy, since some medical products contain latex. Do not use acupuncture in place of urgent care for a shunt problem or infection.

What it costs

The Pricer lists about $90 to $185 per follow-up visit, up to about $230 for a first private visit, and community acupuncture around $50 to $90 (The Pricer).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

We found no herb or supplement that treats spina bifida, repairs nerve damage or replaces medical care. What does matter in this area is a vitamin and a few cautions.

Folic acid is prevention, not treatment

Folic acid is a B vitamin that helps the body make healthy new cells, and getting enough before and during pregnancy can prevent major birth defects of the brain or spine (MedlinePlus). It is used to lower the chance of a neural tube defect in a pregnancy; it does not treat spina bifida that is already present (CDC).

Cranberry and urinary infections

Cranberry is promoted for urinary tract infections. NCCIH says products may lower the risk of recurrent infections in women, but results are inconsistent, studies in other high-risk groups have not found a benefit, and cranberry should not be used instead of proven treatment for an infection (NCCIH). A systematic review of 99 publications on preventing urinary infections in adults with spina bifida found enough evidence to recommend against cranberry (rated level 2), and also against oral antibiotic prevention and treating bacteria in the urine when there are no symptoms; it supported single-use intermittent catheters. The authors noted few studies were done specifically in spina bifida (Tradewell et al., 2018).

Supplements and your medicines

  • Dietary supplements can interact with medicines, and many have not been tested in children or pregnant women (NCCIH).
  • Some herbs interact with common medicines; for example, ginkgo taken with warfarin is linked to a higher chance of major bleeding (NCCIH). People with spina bifida may take medicines for the bladder, bowel, seizures or spasms, so check every product with your pharmacist first. See also our medication safety guide.
  • NCCIH notes that the FDA has found prescription drugs hidden in products sold as dietary supplements, so what is on the label may not be what is in the product (NCCIH).

Approach 5 of 6

Massage therapy

Gentle massage may help muscles feel looser and help a person relax. We found little research on massage for people with spina bifida, and none showing that it changes nerve function.

What the research says

NCCIH describes massage as manipulating the soft tissues, studied mainly for pain conditions such as low-back, neck and shoulder pain, where benefits are often short-term (NCCIH). Those studies were not done in spina bifida, so treat them as general background only.

Safety: skin, feeling and bones

  • NCCIH says the risk of harm from massage appears low, but rare serious problems — a blood clot, nerve injury or bone fracture — have been reported, some with vigorous types such as deep-tissue massage (NCCIH).
  • Reduced feeling can keep a person from noticing cuts, bruises and sores (CDC); skin ulcers and low bone mineral density are among the later complications NINDS lists (NINDS). MBHA therefore suggests a light touch only, no work over sores or red skin, and no deep pressure where feeling is reduced.
  • Latex gloves are a common source of latex exposure (CDC); ask the therapist to use latex-free gloves and products.
  • Skip massage near a shunt site or a recent surgical wound unless your clinic approves.

What it costs

Prices vary by location. At one national chain, franchise price lists show about $125 to $160 for a 60-minute massage for non-members and about $65 to $90 for members, whose memberships run about $70 to $90 a month (The Pricer). Tips are extra.

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

Many of the things that keep people with spina bifida well are daily habits. An MBHA Wellness Coach can help you build them with you or your child, alongside — never instead of — the spina bifida clinic.

Skin, bathroom and safety routines

  • Skin checks. CDC says caregivers should check skin regularly, especially under braces, in damp areas and where pressure builds (CDC). A coach can help you set a daily time and teach teens to do it themselves.
  • The bathroom plan. CDC recommends an individualized, simple toileting plan developed with your providers (CDC); a coach can help you stick to it at home, school and work.
  • Latex-free habits. Many people with spina bifida are sensitive to latex (CDC). A coach can help you build a checklist for clinics, schools and activities.
  • Safety as independence grows. CDC notes that people with spina bifida face higher risks of injury and abuse, and says caregivers should teach them how to stay safe and what to do if they feel threatened (CDC).

Move, sleep and maintain a healthy weight

  • CDC says regular activity matters and that adaptive sports can help prevent obesity and related conditions (CDC). A review of adults with spina bifida found they tended to have an inactive lifestyle, lower aerobic capacity and higher obesity rates, while therapeutic interventions improved activity and balance, though the evidence is low quality (Crytzer et al., 2013).
  • NINDS lists obesity and sleep apnea among later health issues (NINDS). If snoring or tired mornings are a concern, see our sleep apnea guide and talk to your doctor.

Feelings, school and family

  • Mood and anxiety deserve attention. A scoping review of 33 studies of young people with childhood-onset physical disabilities, mainly cerebral palsy, juvenile arthritis and spina bifida, found depression and anxiety were the most commonly studied mental health problems and concluded that integrated models of service delivery are needed to identify and address young people’s mental health needs (Lal et al., 2022). See our Depression and Anxiety guides.
  • If you or someone you know is in crisis, call or text 988 any time (988 Lifeline).
  • The NHS says most children can attend a mainstream school with some support, though some have learning disabilities and need a specialist school (NHS). A coach can help families prepare for school meetings and keep a health summary for teachers.

Planning ahead

If you may become pregnant, CDC advises getting folic acid every day and talking with your doctor first if you have had a previous neural tube defect pregnancy (CDC). A coach can help you keep appointments, medicine lists and a plan for the move to adult care, described below.

Another approach

Hydrocephalus and shunts

Hydrocephalus is an abnormal buildup of cerebrospinal fluid deep in the brain that widens the brain’s fluid spaces and puts harmful pressure on brain tissue (NINDS). Many babies with myelomeningocele have it, and the NHS lists spina bifida as a cause of congenital hydrocephalus (NINDS, NHS).

  • Treatment. The most common treatment is surgery: a shunt (a tube) drains extra fluid, usually to the abdomen, where the body absorbs it. An alternative for some people is endoscopic third ventriculostomy (ETV), which makes a small hole in the floor of the brain so fluid can escape (NINDS, NHS). The NHS says ETV is not suitable for everyone and carries a risk of blockage months or years later, as shunts do (NHS).
  • Shunts need lifelong attention. They generally work well, but they can stop working or become infected, and a person may need several operations to repair or replace a shunt over a lifetime. Regular follow-up helps catch subtle changes (NINDS). A child’s shunt may become too small as they grow and need replacing (NHS). Infections are more likely in the first few months after surgery (NHS).
  • Know the warning signs listed in the red box at the top of this page. The NHS adds that the headache of hydrocephalus may be worse when you wake up, and that neck pain, vomiting, sleepiness, confusion and blurred or double vision can also occur (NHS). The NHS describes shunt alert cards, produced by the UK charity Shine, that tell emergency staff to check whether a shunt is the cause (NHS). MBHA suggests carrying something similar and keeping the neurosurgeon’s name and the shunt type with your child’s emergency information.
  • Longer-term effects. The NHS says many babies born with hydrocephalus have permanent brain damage that can cause learning disabilities, memory problems, short attention span, vision problems, coordination problems and epilepsy (NHS). See our Epilepsy guide.

Another approach

Tethered cord and Chiari II

Tethered cord syndrome happens when scar-like tissue pulls on the spinal cord. It can occur with any type of spina bifida, though it is rare in spina bifida occulta, and can damage nerves, reduce feeling and strength, and affect bowel and bladder control. Surgery to free the cord is often successful (NINDS). CDC says it is common in open spina bifida, stretches the cord as the person grows, and can cause lasting nerve damage; back pain, scoliosis, leg and foot weakness and bladder or bowel changes can be symptoms (CDC). Because the signs can come on gradually while a child is growing, NINDS stresses checking in often with the medical team about any change (NINDS).

Chiari II malformation is a problem in which parts of the brain push down into the neck or spinal canal; some people with myelomeningocele have it (NINDS). The MOMS trial found less hindbrain herniation after prenatal repair (Adzick et al., 2011). Tell the clinic promptly about any new changes. See also our Nerve Damage guide.

Another approach

Bladder and bowel care

Most people with myelomeningocele and closed neural tube defects have incontinence, because these conditions affect the nerves at the bottom of the spine that control the bowel and bladder; many need special routines or help (NINDS). For general background, see our Bladder Problems and Bowel Problems guides.

Bladder

Bowel

  • CDC lists dietary fiber to keep bowel movements regular, a toileting plan, and surgery in some cases (CDC).
  • A scoping review of 23 studies of transanal irrigation in children with spina bifida concluded that the evidence suggests it is a safe and effective method for managing fecal incontinence, with varied study methods (Xavier et al., 2023). Ask your clinic whether it fits.

Another approach

Mobility, braces and staying active

CDC says people with spina bifida may walk unaided, use braces, crutches or walkers, or use a wheelchair, and that higher defects are more likely to involve paralyzed legs and wheelchair use while lower defects often leave more leg function (CDC). NINDS notes that children usually have delays with walking and movement and that a doctor may recommend physical therapy early on to improve strength and function; it also warns that strength, feeling and mobility may be lost with age in some people (NINDS).

  • Therapy. The NHS lists physiotherapy to help movement and prevent bone problems and muscle loss, and occupational therapy for everyday tasks and independence (NHS).
  • Braces and walking aids. A systematic review of six small studies in ambulant children found some support for ankle-foot orthoses and forearm crutches improving walking measures, but the evidence was low quality and benefits in daily activities were not studied (Ivanyi et al., 2015). A clinic that makes braces can tell you what fits.
  • Equipment. MBHA plans a separate Wheelchair Users guide. Medicare covers medically necessary walkers, crutches and wheelchairs after the deductible (20% coinsurance) (Medicare.gov).
  • Scoliosis. The NHS lists a curved spine among the symptoms of open spina bifida (NHS); see our Scoliosis guide.

Another approach

Skin and pressure-injury prevention

In the National Spina Bifida Patient Registry, 19% of 3,153 participants reported a pressure ulcer at their most recent clinic visit. Higher level of lesion, wheelchair use, urinary incontinence, a shunt, above-the-knee orthopedic surgery, recent surgery and male sex were each linked with having one (Kim et al., 2015). Pressure sores can cause serious infections and are slow to heal once advanced, so prevention matters (MedlinePlus).

Another approach

Latex allergy

CDC says many people with spina bifida are sensitive to latex, with reactions ranging from a rash or redness to breathing difficulties, and lists baby nipples and pacifiers, urinary catheters, disposable gloves and condoms as common sources (CDC). MedlinePlus explains that repeated exposure to a protein in natural latex can make a person more likely to develop an allergy, and the best approach is to avoid latex; latex-free versions of many products exist (MedlinePlus).

  • Prevention works. A German children’s hospital that began latex-free precautions around surgery and on wards for all spina bifida patients found latex antibodies in 7% of children born afterward, versus 42% of an earlier group (Cremer et al., 2002).
  • Rates differ. A 2026 study of 79 children with spinal dysraphism in southern India found much lower clinical latex allergy than Western reports, and called for region-specific data (Udayakumaran et al., 2026). Because it is hard to predict who will react, many clinics simply use latex-free supplies.
  • Practical steps (MBHA suggestions). Tell every clinic, dentist, school and emergency responder about latex sensitivity; carry any prescribed epinephrine; and see the 911 steps in the red box at the top. See our Allergies guide.

Another approach

Learning, school and mental health

NINDS says children with myelomeningocele may have learning disabilities, such as trouble paying attention and understanding concepts, impaired motor skills and memory, and challenges with organization and problem solving (NINDS). MedlinePlus notes that most people with spina bifida are of normal intelligence (MedlinePlus), and the NHS says most children can attend mainstream school with some support (NHS). Hydrocephalus is treated best by an interdisciplinary team that includes educational experts (NINDS).

NINDS lists depression among health issues that may arise with age (NINDS), and a scoping review found that mental health problems in teens and young adults with childhood-onset physical disabilities, including spina bifida, are common subjects of study and need integrated services (Lal et al., 2022). Ask your care team about counseling and school supports, and see our Developmental Disabilities guide.

Another approach

Adulthood and the move to adult care

NINDS says most people with spina bifida lead long lives (NINDS). A Swedish register study of 1,735 people from 1973 to 2021 found that first-year survival rose from 75% to 94% and that mortality for children aged 2 to 18 and for adults was low, with minimal differences between decades (Andersson et al., 2024).

  • Transition. The 2023 update to the Spina Bifida Association’s transition guidelines reports that structured transition programs increase the chance of establishing adult care and reduce acute-care use, but that they are still not widely used (Fremion et al., 2023). Start planning in the teen years: who will be your adult primary care provider, urologist and neurosurgeon?
  • Family and fertility. The NHS says many people with open spina bifida can have children (NHS); NINDS lists fertility problems in men as a possible later issue (NINDS). If you are planning a pregnancy, talk with your doctor about folic acid first (NINDS).
  • Later health issues can include skin ulcers, low bone density, obesity, kidney failure, sleep apnea and depression (NINDS); regular checkups catch them early.

Member stories

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