Spina bifida is a condition where a baby’s spine and spinal cord don’t develop properly in the womb. It happens very early in pregnancy, usually within the first month, when the neural tube (the part that forms the brain and spinal cord) should close. If it doesn’t close fully, a gap remains in the spine. This is known as a neural tube defect.
What are the different kinds of spina bifida?
There are several types of spina bifida, which vary in severity:
- Spina bifida occulta (hidden spina bifida) – The mildest form, where one or more vertebrae don’t form properly. The spinal cord and nerves are usually unaffected, so most people have no symptoms and may only find out after an X-ray or scan for something else. However, some children may develop problems later, such as weakness, foot deformities or bladder issues, if the spinal cord becomes tethered.
- Closed spinal defects (lipomyelomeningocele or meningocele) – These can cause a fatty lump or fluid-filled sac on the back. They sometimes result in neurological problems if nerves are trapped or stretched.
- Open spina bifida (myelomeningocele) – The most serious type, where part of the spinal cord and nerves are exposed through an opening in the spine. Babies with this form nearly always need surgery soon after birth and ongoing care for associated conditions such as hydrocephalus (fluid on the brain).
What are the signs of spina bifida and how is it detected?
Routine pregnancy screening aims to detect spina bifida early. A mid-trimester anomaly scan, usually done at around 20 weeks, checks the baby’s spine, brain and other organs. If spina bifida is suspected, you should be referred to a specialist fetal medicine team. They’ll explain what the diagnosis means, the possible impact on your baby, and the options for care and treatment.
What is the treatment for spina bifida?
After birth, babies with open spina bifida usually need urgent surgery to close the opening on their back. Some may also develop hydrocephalus, a build-up of fluid on the brain that can increase pressure and cause damage if not treated. This can happen because the normal flow of cerebrospinal fluid (CSF) around the brain and spinal cord is disrupted by the spinal defect or by changes in the shape of the brain (such as the Chiari II malformation, which is often linked with open spina bifida). Hydrocephalus is typically managed by fitting a shunt, which drains excess fluid from the brain into another part of the body, most commonly into a space in the abdomen, but sometimes into the chest or heart, where it can be safely absorbed.
Children with spina bifida can also be born with a tethered spinal cord, where the spinal cord is abnormally attached (or tethered) to surrounding tissues in the spine. This means that as the child grows, the spinal cord can stretch, leading to neurological symptoms that worsen over time. Early signs of tethering can include changes in walking, weakness in the legs or feet, curvature of the spine, or loss of bladder or bowel control. In many cases, an MRI scan can confirm the diagnosis, and surgery to release the tethered cord can prevent permanent nerve damage if carried out promptly.
For clear and practical support, the charity Shine provides information and resources for families and adults living with spina bifida and hydrocephalus, including education, continence and mobility guidance.
When might spina bifida involve medical negligence?
While most NHS care is excellent, mistakes can happen. If the care you or your child received fell below a reasonable standard and caused harm, there may be grounds for a spina bifida negligence claim or hydrocephalus compensation claim. Below are some examples of how this might occur.
Antenatal care and screening
- Failing to offer or correctly perform standard antenatal screening tests, such as the 20-week anomaly scan.
- Misinterpreting scan findings that clearly showed signs of spina bifida or related abnormalities.
- Failing to refer expectant parents to a fetal medicine specialist for further assessment.
- Not offering or explaining available diagnostic tests (such as amniocentesis or specialist scans).
- Inadequate counselling about the diagnosis and possible outcomes, leaving parents unable to make informed decisions about continuing or managing the pregnancy.
- Failing to record or communicate important findings to the wider obstetric team, resulting in missed opportunities for early intervention.
Perinatal (around the time of birth) care
- Delayed or poorly performed surgery to close an open spina bifida lesion, leading to infection or further nerve damage.
- Failure to protect the exposed spinal tissue immediately after birth, for example by not covering it with a sterile dressing.
- Inadequate monitoring for or delayed treatment of hydrocephalus, resulting in increased pressure on the brain and neurological injury.
- Not arranging urgent transfer to a neurosurgical unit where specialist surgery and neonatal care are available.
- Poor coordination between obstetric, neonatal and neurosurgical teams, causing unnecessary delays or miscommunication about the baby’s condition.
- Failure to provide appropriate information to parents about ongoing risks, follow-up, or warning signs after discharge.
Postnatal and ongoing care
Some people with spina bifida develop hydrocephalus, a build-up of fluid on the brain that increases pressure inside the skull. This is often managed with a shunt, which requires careful monitoring throughout life. Negligent care can occur when professionals fail to recognise or respond to shunt complications such as blockages or infections. Warning signs can include severe headaches, vomiting, drowsiness, irritability, vision problems, or changes in behaviour. If these are missed or dismissed, the results can be devastating.
Examples of potential negligence include:
- Failing to act on clear symptoms of shunt malfunction or infection.
- Delaying brain scans (CT or MRI) or referral to neurosurgery despite red-flag signs.
- Sending patients home from A&E without proper investigation or observation.
- Not providing parents or carers with information on how to recognise shunt problems.
- Poor follow-up care or delayed review after shunt surgery, leading to avoidable deterioration.
- Failure to identify and treat tethered cord symptoms in a child known to have spina bifida, resulting in preventable neurological damage.
- A blocked or infected shunt can quickly become life-threatening. Prompt recognition and treatment are essential to prevent permanent brain injury or even death.
For a real-life example of how delay can lead to harm, see our case study: Delayed diagnosis of a shunt dysfunction in hydrocephalus
Everyday support and trusted information
Beyond the medical and legal aspects of spina bifida, families often need practical, day-to-day help. This might include mobility aids, continence support, educational advice, and emotional support networks. Shine provides excellent, trustworthy guidance and community connections to help families navigate life with spina bifida or hydrocephalus. Visit their dedicated pages here:
How Davies and Partners Solicitors’ medical negligence team can help
If you believe mistakes in care made your child’s spina bifida or hydrocephalus worse, or caused avoidable injury, our specialist birth injury solicitors can help. We have extensive experience handling medical negligence claims involving delayed diagnosis, shunt complications and negligent antenatal care.
We offer a free, no-obligation review to discuss what happened, explain your options in plain English, and explore funding choices such as no win, no fee agreements. We’ll handle your case sensitively and keep you informed every step of the way.
To find out more or talk to one of our spina bifida and hydrocephalus negligence claim specialists, contact us today.
Read our related case study: Delayed diagnosis of a shunt dysfunction in hydrocephalus
Get practical support: Shine – Spina Bifida Information and Support.
This article is for general information only and is not a substitute for legal or medical advice. For guidance on your individual circumstances, please contact Davies and Partners and we’ll be happy to help.