This week is Spina Bifida Awareness Week, and our charity partner Shine is using the opportunity to raise awareness of the challenges faced by people living with spina bifida, the support they offer as a charity, and how our communities can get involved.
For a number of reasons, people with spina bifida can often find their spinal cords restricted or ‘tethered’ which can sometimes lead to Tethered Cord Syndrome. At Enable Law, we regularly work with families affected by tethered spinal cord syndrome (TSCS) Claire Leslie, Partner in our Medical Negligence team, has many years of experience supporting families whose lives have been impacted by this diagnosis.
What is tethered spinal cord syndrome?
Tethered spinal cord syndrome is a neurological condition where the spinal cord becomes attached to tissue around the spinal canal, restricting its natural movement. It most commonly occurs during a child’s development in the womb, although it can also arise later because of spinal surgery or trauma. As a child grows, the nerves connected to the spinal cord, which control vital functions like leg movement, bladder and bowel control, become stretched and compressed. This reduces blood flow and can cause significant, and sometimes permanent, damage to the parts of the body those nerves control. Depending on where the spinal cord is tethered, a child may experience a range of issues, including bladder or bowel problems, leg pain, weakness or changes in mobility or back pain or spasms. The longer the spinal cord remains tethered, the greater the risk of lasting damage.
The link between spina bifida and medical negligence
While a tethered spinal cord itself isn’t the result of medical negligence, we often see families affected when early signs were missed or not properly investigated. Babies born with spina bifida, or with a tethered spinal cord, sometimes have visible marks at the base of the spine, such as a dimple, a small hole, a raised red “strawberry mark” (haemangioma), a tuft of hair, or a fold of skin. NICE guidance recommends that when these marks are present, doctors should arrange an ultrasound or MRI scan to check for possible spinal abnormalities. If a tethered cord is found, the child should then be monitored by neurosurgeons and urologists so that any problems with walking or bladder control can be detected and treated early, often through surgery to release the tethered cord. Unfortunately, in some cases, these signs are missed or ignored, meaning diagnosis is delayed until symptoms appear later in childhood – sometimes when permanent damage has already been done.
The effects of a late diagnosis of tethered spinal cord
A late diagnosis of a tethered spinal cord can have serious consequences.
We have supported families where a child’s symptoms, such as changes in walking, leg pain, or loss of bladder control, did not appear until they were much older. In one case, a client’s child was eight years old before the condition was diagnosed. By that stage, the nerves had already been damaged beyond full recovery. Early diagnosis allows doctors to monitor and intervene before long-term harm occurs. If the tethered cord is only discovered once nerve damage is irreversible, even surgery to release it can leave a child with lifelong mobility or continence difficulties.
How a compensation claim can help
A successful medical negligence claim can never undo what has happened, but it can make a meaningful difference to a child’s future quality of life. Through compensation, families can access vital therapies, specialist physiotherapy, adapted equipment, and ongoing support to give their child the best chance to thrive. At Enable Law, our role is to get answers, help families understand whether their child’s care was negligent, and secure the financial and rehabilitative support they need for the future.
Support from Shine; our charity partner
Shine is a national charity supporting people affected by spina bifida and hydrocephalus. Their website offers a wealth of information and resources, and by joining you can access local and national support groups.
Enable Law is proud to partner with Shine to help raise awareness, provide legal guidance, and improve the support available to families affected by spina bifida negligence.
Expert legal support for tethered spinal cord cases
Our specialist medical negligence team, led by Claire Leslie, has helped many families affected by tethered spinal cord syndrome and spina bifida. We understand the devastating impact that delayed diagnosis and treatment can have and we’re here to help you find answers and access the support you need.
If you are concerned that your child’s spinal condition may not have been properly investigated or diagnosed, we offer a free, confidential conversation to help you understand what options are available.
To have a free, confidential discussion with a member of our dedicated team call us today on 0800 044 8488 or fill in our contact form so we can get in touch with you at a time convenient for you.
