If you have been told that your baby has spina bifida, whether during the pregnancy or after the birth, this page explains what the words mean in plain language, what care your child will need, and what life with spina bifida can look like. The information here is general, your child's medical team will discuss what applies specifically to your child.
What is spina bifida?
Very early in pregnancy, usually before most parents even know they are pregnant, the baby's spine and spinal cord form by folding closed, top to bottom, like a zipper. Spina bifida happens when a small part of that zipper does not close all the way. The medical name for this kind of problem is a "neural tube defect."
Spina bifida is not a single entity, there are several forms and they are very different from each other:
Spina bifida occulta (or "hidden" spina bifida) is the mildest form. A small part of the spine bone does not close, but the spinal cord and the nerves underneath are normal. Most people with occulta have no symptoms at all, it is often found only by chance on an X-ray taken for an unrelated reason. Most children with occulta need no treatment.
Meningocele is less common. A sac of fluid pokes through the gap in the spine, but the spinal cord itself stays in its normal place inside the spinal canal. Surgery to close the sac is usually needed, and most children do well afterwards.
Myelomeningocele is the most serious form, and it is what people usually mean when they say "spina bifida." Here, both the spinal cord and the nerves come out through the gap and sit on the baby's back, often inside a sac. This affects how the nerves below that level work, and so it affects the legs, the bladder and the bowel. It is also commonly associated with a related problem at the back of the brain (called Chiari II) and with hydrocephalus (extra fluid in the brain).
How much spina bifida affects a child depends very much on where on the back the defect is, and on which form of spina bifida it is. A defect low down (in the sacrum) tends to affect the child less than a defect higher up. Two children with the same diagnosis can have quite different outlooks.
How spina bifida is found
Most cases of myelomeningocele are now picked up during the pregnancy, long before the baby is born. Occulta and meningocele are often found later, sometimes as a chance finding.
In babies
- A visible opening or sac on the back at birth (the form that needs immediate surgery)
- Weakness or absent movement of the legs
- A larger-than-expected head, a tense or bulging fontanelle, or rapidly enlarging head size (signs of hydrocephalus)
- Difficulty with feeding, swallowing, or breathing in the first weeks (signs that can suggest a Chiari II problem)
- Difficulty passing urine or stool
In older children
- A dimple, tuft of hair, fatty lump, birthmark or skin tag on the lower back, these can be the only outward sign of occulta or a tethered cord
- Difficulty with toilet training, or accidents starting up after toilet training was already established
- A foot that turns differently from the other, or unequal strength between the legs
- New back or leg pain, or new weakness or numbness as the child grows, these can be signs of a tethered cord
- Frequent urinary tract infections
How is it diagnosed?
During pregnancy, many cases are picked up on the routine 18 to 22-week ultrasound. A maternal blood test (alpha-fetoprotein, or AFP) can also raise the suspicion at an earlier stage. If spina bifida is suspected, a more detailed ultrasound, and often a fetal MRI, is performed by a specialist team to confirm the diagnosis, locate the defect precisely, and assess the brain for signs of Chiari II and hydrocephalus.
After birth, the diagnosis of myelomeningocele is usually clear from looking at the baby's back. An MRI of the brain and spine is then done to guide care, and an ultrasound of the head is done to look for hydrocephalus.
For older children with a suspected occulta or tethered cord, the test of choice is an MRI of the spine. An ultrasound of the spine can be useful in very young infants whose spinal bones have not yet ossified.
Your child's team will also assess the kidneys and bladder (with an ultrasound of the urinary tract and any further studies the urologist may request) and check the leg strength and reflexes, because how the nerves are working matters just as much as what the picture shows.
How is it treated?
Treatment for spina bifida depends entirely on which form of the condition is present. Spina bifida occulta usually needs no treatment at all. For myelomeningocele, the treatment is lifelong and involves a team of specialists, neurosurgery, urology, orthopaedics, neurology, rehabilitation and others. The main pieces of the care plan are outlined below.
Closing the back (postnatal repair)
For a baby born with myelomeningocele, the exposed spinal cord and back wound need to be covered as soon as possible, usually within the first 24 to 48 hours of life, to protect the cord from infection and further injury. The neurosurgeon and a plastic surgeon often work together to close the layers carefully. The first operation does not undo any nerve damage that has already occurred, but it protects what is there.
Closing the back before birth (prenatal repair)
For some pregnancies, the defect can be repaired before the baby is born, at specialist fetal surgery centres. Large studies have shown that in carefully selected families, prenatal repair can reduce the need for a shunt later and improve the motor function in the legs. It is not the right choice for every family, there are real risks to the mother and a higher chance of premature birth. The fetal medicine and neurosurgery teams will explain in detail whether your pregnancy is suitable and what the trade-offs are.
Treating hydrocephalus
About 8 out of 10 babies with myelomeningocele develop hydrocephalus (extra fluid in the brain) that needs treatment. The two main options are a shunt (a small tube system that drains the fluid into the abdomen), or, for some babies, an endoscopic third ventriculostomy (ETV), often combined with choroid plexus cauterisation (CPC). The neurosurgeon will discuss which option is right for your child. See the separate page on hydrocephalus for more detail.
Care for the bladder and bowel
Almost all children with myelomeningocele have a "neurogenic" bladder, meaning the nerves to the bladder do not work the way they should. This is one of the most important issues to manage well, because it protects the kidneys for life. Your child will be seen regularly by a paediatric urologist. Many children use clean intermittent catheterisation (CIC) several times a day, sometimes together with medications. Bowel care also matters, and when it is done well it improves quality of life enormously.
Care for the legs, hips, and spine
An orthopaedic surgeon and a physiotherapist work together to keep the joints flexible, strengthen what can be strengthened, fit braces where they help, and address problems like hip dislocation, foot deformities, or scoliosis (a curved spine) if they develop. Many children walk with the help of braces or walkers, others use a wheelchair and are fully mobile and independent.
Watching for tethered cord later
Once the back is closed, the spinal cord can sometimes become "tethered" (stuck to the scar tissue) as the child grows. If new weakness, new pain, or new bladder problems appear later in childhood, your team will look for this. Another operation is sometimes needed to release it.
A note on latex: many children with spina bifida develop a latex allergy because of repeated medical exposure from a very young age. Most paediatric hospitals are now latex-safe by default, but it is always worth reminding any new team about this. Folic acid: taking folic acid before and during early pregnancy prevents many (though not all) cases of neural tube defects. This is important information for any future pregnancies in the family.
What can we expect?
The first weeks after a baby is born with myelomeningocele are intense. The closure operation, monitoring for hydrocephalus, and a stay in the neonatal intensive care unit (NICU) are all part of the early picture. The team will gradually introduce you to the various specialists your child will be seeing, neurosurgery, urology, orthopaedics, neurology, developmental medicine and others.
After the first months the rhythm of care settles. Most children with spina bifida are followed in a dedicated multidisciplinary spina bifida clinic where several specialists see your child on the same day. This is much easier for families than many separate appointments, and it helps the team coordinate decisions.
What life looks like depends a great deal on the level of the defect. Children with low (sacral) defects often walk without any aid and may have only mild bladder issues. Children with higher (thoracic or high-lumbar) defects more often use a wheelchair and need more help with bladder, bowel and skin care. Most children, at every level, attend mainstream school, make friends, learn, play, and grow up to live full, meaningful adult lives.
Cognitive and learning needs vary. Many children with spina bifida have normal intelligence. Some have specific learning differences, particularly in attention and in certain kinds of thinking, and these children benefit from extra support at school. A developmental assessment and, when needed, support in school can make a substantial difference.
This is a marathon, not a sprint. You will learn an enormous amount about your child's body and needs over the years, and in many ways you will become the expert on your child. The medical team is there to walk alongside you. So are other families who have been on this path, and several excellent international organisations dedicated to spina bifida care and support.
Questions you might ask your child's doctor
- At what level of the spine is the defect, and what does that usually mean for the legs, bladder and bowel?
- Is prenatal (before-birth) repair an option for our pregnancy? What are the benefits and the risks for our specific situation?
- After the birth, when will the back closure operation be performed, and what will the first few weeks look like?
- Does my baby have hydrocephalus? If so, do you recommend a shunt or an ETV, and why?
- Will my child be followed in a multidisciplinary spina bifida clinic? Who will be on the team?
- What can we do at home to protect my child's kidneys, skin and bones in the long term?
- What are the signs of a tethered cord that we should be watching for as our child grows?
- What support is available for school, learning, and developmental needs?
- What is the latex policy in this hospital, and how should we manage latex exposure outside the hospital?
- How should we think about folic acid and the planning of any future pregnancies?
When to call your child's doctor right away
Children with spina bifida, particularly those with a shunt, can develop problems that need to be looked at quickly. Do not wait, contact your child's neurosurgery team (or go straight to the emergency department) right away if you notice any of the following:
- Any signs of raised pressure in the brain - worsening headache with vomiting, increasing drowsiness or difficulty rousing, or a tense bulging fontanelle in a baby
- A seizure
- New weakness in the legs, or loss of a movement the child used to be able to do
- New back pain, or new pain when the leg is straightened or the back is stretched
- A change in how the bladder or bowel works - new wetting accidents after being dry, or a new inability to pass urine
- Redness, swelling, fluid leaking, or tenderness along the line of the shunt, or at the back surgical scar
- A pressure sore - any new red area on the skin, particularly over the bottom, hips or feet, that does not fade
- An unexplained fever in a child who has a shunt
- Difficulty swallowing, a weak or different-sounding cry, or any change in breathing (these can be signs of a Chiari II problem)
If your child is difficult to rouse, is having a seizure, or is having difficulty breathing, this is an emergency, go to the nearest emergency department or call the emergency services immediately.
More information from trusted sources
-
Spina Bifida Association — The leading US-based non-profit dedicated to spina bifida, with comprehensive plain-language guides covering every stage of life - pregnancy, infancy, school years, adolescence, and adulthood - plus family support resources.
https://www.spinabifidaassociation.org ↗
-
Shine Charity (UK) — A UK-based charity supporting people affected by spina bifida and hydrocephalus, providing high-quality information, a family support service, and a helpline.
https://www.shinecharity.org.uk ↗
-
International Federation for Spina Bifida and Hydrocephalus (IF) — An international umbrella organisation linking the national spina bifida and hydrocephalus societies worldwide. Useful for finding a society in your country or region.
https://www.ifglobal.org ↗
-
American Association of Neurological Surgeons — Patient Information — The patient education pages of the professional society, with overviews of spina bifida, Chiari malformation, and hydrocephalus in plain language.
https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments ↗
-
HealthyChildren.org (American Academy of Pediatrics) — Trusted patient and family information from the American Academy of Pediatrics, covering many paediatric conditions including spina bifida.
https://www.healthychildren.org ↗