This week marked the fifth anniversary of my baby boy Cayden’s death. It never gets any easier and it never will.
My heart still feels broken, I still get angry over how he was completely let down by doctors, and more than ever I feel passionate about fulfilling the promise I made to myself and my son that I would do everything in my power to raise as much awareness as I possibly can about meningitis and the danger of late diagnosis.
I’m driven by the thought of preventing any other families going through what we went through as a family. It is why I have shared Cayden’s Story, and why I’m prepared to share my experiences, feelings, frustrations and regrets.
I’ve previously written about the need for parents to never simply look for reassurance from doctors, but instead to look for doctors to be thorough in their examinations, to feel confident that they’ve fully explored all possibilities, and to feel happy that doctors and specialists have given them all the information that they need.
Sadly, my experiences have taught me that often, patients and parents are not given all the information they should. I regret not demanding more.
Yes, I asked questions, but I didn’t demand more. I accepted what I was being told, as they were the doctors and specialists after all. I assumed all would be ok.
It was only after Cayden had passed away that I started to ask stronger questions after seeing the tumour which had never been removed and had ultimately caused him to get the meningitis that killed him.
It was then that I started to seriously suspect that so much more could and should have been done for my baby boy.
I’d been told all along that Cayden was healthy and that there had been nothing to worry about, yet the reality was that he’d been living with this dermoid tumour at the base of his spine.
It should have been identified and removed when he was just four months old and first contracted meningitis.
By the time Cayden became seriously ill seven months later, he already had significant amounts of pus in the ventricles of his brain. Meningitis had taken him from me.
I knew then that this must have been a long-term problem, and my suspicions were that mistakes must have been made. How could he have been in such a bad way when I had been told for months not to worry?
The simple fact is that I would never have got the full answers had I not been determined to fight for the truth and unwilling to accept that Cayden had simply been one of the unlucky ones.
Had I not sought legal support, I’d still think nothing could have been done.
I wasn’t getting answers until my solicitor Renu Daly demanded Cayden’s treatment be examined, and that scans taken when Cayden was four months old be looked at again by independent experts.
It was then we were told that an MRI scan taken at the time showed an open passage (tract) running from the base of Cayden’s spine to his lower back, where he had always had a small lump.
This should have led them to take action at the earliest possible opportunity to prevent a further episode of meningitis, as 60 per cent of open tracts point to the presence of a dermoid tumour which is known to cause bacterial infection of the central nervous system and meningitis.
Recently, Cambridge University Hospitals NHS Foundation Trust admitted fault and that Cayden’s second episode of meningitis would have been prevented had they taken the appropriate action at the right time.
My baby boy could and should have been saved, and he should be here with his family now, aged six and looking forward to a long and happy life.
Had I not asked questions and sought legal advice, I would never have known, and would not have been doing what I am doing now, trying to raise awareness and trying to prevent others suffering the same heart-breaking loss.
It is sadly too late for Cayden, but not for so many others.
Ask the questions that are in your mind, don’t accept anything other than thorough explanations and examinations, and if you are still not happy, take expert advice from those who can get the answers for you.