Cayden’s Story – by Gaynor McConnell

My son Cayden was born December 3, 2010 with spina bifida. 

He suffered from a tethered spinal cord, whereupon his spinal cord failed to separate from the skin of his back during his development in the womb. This would eventually limit the movement of the spinal cord within his spinal column.

From birth a small lump was present at the base of Cayden’s back, and this is something which should have alerted healthcare providers to the possibility of him suffering from an open channel or tract to his spine, and that he would also have had a small dermoid cyst which consisted of skin cells (called a dermoid cyst).

Cayden was referred to specialist Neurosurgeons on December 30, 2010 and he was reviewed there on January 31, 2011. His condition was noted and a plan was made to monitor his lower limb and bladder function throughout his childhood. It was also recorded that at some point he would need an MRI scan of his spine. His next review was due in six months’ time.

However April 3, 2011, Cayden was admitted to Hospital as an emergency. He was crying, suffering from a fever and he was not feeding well. Staff recognised that the lump at the base of his back had increased in size. They now suspected and later diagnosed meningitis.

On April 11 an MRI scan was carried out. This clearly identified that Cayden did have an open tract leading from his spinal column to the external lump at the base of his back – and that should have been the warning sign for healthcare professionals to search and remove the dermoid cyst, something which is commonly recognised to function as a potential conduit for bacterial infection of the central nervous system and cause meningitis.

 

With aggressive treatment, Cayden recovered from the meningitis and was subsequently discharged from hospital April 20, 2011, but sadly, the opportunity to take appropriate action and prevent meningitis returning was missed. That was an error which cost my little boy his life.

Had the cyst been completely or even partially removed a recurrence of the meningitis would have been rare.

On November 10, 2011, I took Cayden to the doctors as he was unwell with fever. He was prescribed antibiotics and steroids, but despite this his health deteriorated rapidly and just three days later he was rushed to hospital by ambulance.

He had suddenly become unresponsive at about 7pm and upon arrival at the hospital his skin was mottled and he was suffering from seizures. My baby boy was diagnosed with a severe type of meningitis, so severe in fact that consequential brain injury was likely to be severe.

I was told he already had excessive fluid and pus in the ventricles of his brain and the outcome was likely to be poor. From that point he failed to show any improvement.

The dermoid cyst was eventually explored in surgery on November 22, but a CT scan four days later showed the ventricles in his brain were enlarged and containing excess fluid and debris, despite the insertion of a drain to reduce this.

Cayden’s neurological condition never improved and he continued to suffer from multiple fits. A further MRI scan was performed on November 30 but this only showed extensive and worsening fluid collection in Cayden’s brain.

 

 

By this time, myself and my eldest son were staying next to the hospital to be there 24 hours a day for Cayden. We were there for him, but we were only watching him being taken from us. He couldn’t see or communicate, he was just a shell of the baby boy I loved.

Finally, Cayden’s dermoid cyst was removed in surgery on December 8, but still it did nothing to improve Cayden’s situation and it was all too little too late.

Cayden was discharged home to die and passed away in my arms on February 15, 2012.

Watching you baby boy suffer so badly, and feeling like you could do nothing to help him, was completely heart-breaking and devastating. I felt like I lost him three times. I felt I lost him when he was rushed into hospital, then felt liked I’d brought another child home with me to die, as there was no life in him, nothing like the Cayden I knew. Then I lost him again, when he passed away.

I was determined to find answers as to what happened, and those answers, after four years of pushing, were shocking, and something all parents need to know.

Four years on, a Hospital Trust has now admitted that the care provided was below standard after they missed crucial warning signs in his early care, and that had they removed the tumour when Cayden was four months old, the meningitis may not have retuned, and I would still have my little boy with me today. He’d be six years old.

This is the final picture Cayden – dying at just 14-months old.

I want to raise awareness of meningitis. Despite our heartbreak since Cayden’s death, I am determined to show other parents that meningitis doesn’t always start with a mottled rash.

It was incredibly hard to share his final picture but I want to ensure other parents are aware of the symptoms and never take no for an answer.

I trusted the doctors and the specialists looking after Cayden as I thought they knew best, but everything in my gut instinct told me something was seriously wrong.

He was always ill, having colds and infections, but doctors said this was perfectly normal and just gave him antibiotics. I was made to feel like he was just one of those babies that is often poorly and gets every bug and illness going around.

Having already had two boys, I knew that babies soon picked up illnesses, but I always felt something was wrong. I was even told there was nothing to worry about with the lump at the bottom of his back.

I can never forgive the doctors for how badly they let Cayden down. It is disgusting. Losing him was completely heart-breaking and it destroyed and changed two families for the rest of their lives.

Losing Cayden has made me feel passionate about the need to better educate parents about meningitis and the many different strains of it, how to look out for them and how dangerous they can be.

This is why I’ve decided to share pictures of Cayden. He looked like any other boy but he was dying inside. Hopefully these pictures will make all other parents think about what happened and not accept doctors dismissing their concerns.

If you are currently or have been affected by a similar experience to that suffered by Cayden, myself and my family, please leave a reply using the form below or privately via the contact page.