When Lucas (name changed for privacy) was born in 2008, his parents noticed a small red mark on his lower back. They were told it was nothing serious.
Unfortunately, that mark was actually a warning sign of spina bifida occulta (often known as closed spina bifida), a condition that involves the spinal cord being tethered to the tissues in the spine. This condition can affect bladder, bowel and mobility, and in Lucas’ case, the condition went undiagnosed for more than five years.
By the time the problem was finally found on an MRI scan in 2013, Lucas had already begun to suffer symptoms that would change his daily life. Surgery eventually took place, but it was several years later than it should have been.
With our help, Lucas and his family recently secured a significant, six-figure settlement from the hospital trust responsible for his early care.
What went wrong with Lucas’ spina bifida diagnosis?
From birth, Lucas had several features on his lower back – including a haemangioma (a type of birthmark) – that experts agree should have triggered an ultrasound scan. Medical textbooks state clearly that this kind of sign should be investigated to rule out hidden spinal problems.
If the hospital had arranged that scan, doctors would have discovered his spina bifida much earlier, and Lucas would have been monitored closely as he grew.
Instead, over the years, Lucas ’s parents began to notice:
- Changes in his walking
- Bladder problems
- Increasing bowel difficulties
These symptoms were exactly the type of problems that his parents would have been told to look out for if an early scan had been performed and his parents told of the diagnosis.
By the time the MRI finally took place, Lucas’s condition had already begun to deteriorate. Surgery was offered – and initially declined because symptoms still seemed manageable – but within a year his condition had worsened enough that surgery became unavoidable.
How the delay affected Lucas
Because of the late diagnosis and delayed surgery, Lucas has been left with ongoing issues, including:
- Bladder incontinence, requiring catheterisation
- Frequent urinary tract infections
- Bowel problems, including constipation and occasional incontinence
- A foot deformity, requiring surgery, orthotics and physiotherapy
- Emotional and psychological impact of managing a long-term condition
Surgery to untether a spinal cord can only stop further deterioration; it cannot reverse the damage that has already been caused, so Lucas will have his symptoms for the rest of his life.
Our case was that earlier diagnosis would have resulted in earlier surgery, and Lucas’ symptoms would not have been so severe.
Despite everything, Lucas has shown remarkable resilience and continues to play sport at a high level.
Why the case settled
The experts for both sides disagreed on what would have been avoided with earlier surgery and so if settlement could not be reached, it would be for a judge to decide at the trial.
To see if we could avoid the risk and cost of a trial, both sides met to discuss settlement.
Our legal team analysed the strengths and risks of the claim. Because of the complexity of the case, we instructed two barristers – Mr John Whitting KC and Mr Thomas Hayes of 1 Crown Office Row chambers.
We believed Lucas would likely succeed on the issue of substandard care – the missed opportunity to arrange a scan soon after birth or before 12 months of age. But proving that every later medical problem was caused by that delay would have been challenging, especially the orthopaedic aspects.
At the settlement meeting, taking everything into account, the settlement that was reached fell within the reasonable range for a case of this complexity and uncertainty. It avoided the stress of a lengthy trial and ensured Lucas received meaningful support now rather than years down the line.
What this means for Lucas and his family
The settlement will help cover:
- Specialist medical treatment
- Physiotherapy and equipment
- Travel for hospital appointments
- Continence supplies
- Support to help Lucas live as independently as possible
While no amount of money can reverse the delay in diagnosis, the settlement gives Lucas and his family financial security and access to the help he needs as he moves into adulthood.
If you’re worried about a delayed diagnosis
Many parents are told not to worry about birthmarks, dimples or marks on a baby’s spine – but sometimes these can be important warning signs. A simple scan can make a life-changing difference.
We also partner with Shine, the national spina bifida and hydrocephalus charity, who offer amazing support to children, adults and their families who are affected by spina bifida occulta and tethered spinal cords.
As a member of the Shine legal panel, we regularly support Shine members who have concerns about the care they have received. If you feel your concerns were ignored or your child’s diagnosis came too late, we’re here to help. Our medical negligence team specialises in spina bifida, hydrocephalus. delayed diagnosis and paediatric cases. Contact us for free, confidential advice.