My name is Gaynor McConnell, and this is Cayden’s Story.

My gorgeous little boy died aged just one from meningitis. He’d been born with spina bifida, a condition where the spine does not develop as it should in the womb.

I was told a small external lump at the bottom of his spine was ‘nothing to worry about’ – despite Cayden often being ill and suffering from many infections.

He suffered a first bout of meningitis aged four months, at which time an MRI scan showed an open passage (tract) running from the base of his spine to the area of his lump. This was a warning sign missed by doctors that Cayden had a dermoid tumour which needed removing.

Instead, no action was taken, and I was repeatedly told there were no major concerns over his health. Seven months later, Cayden became seriously ill, and this time he was not able to overcome meningitis and died.

Only after his death, when I started asking further questions, did I begin to discover that Cayden could and should have been saved, and after four years, the Hospital Trust finally admitted being at fault for Cayden’s death.

Losing a baby is heart-breaking for any parent – but knowing your baby could and should have been saved by doctors, and would still be here today if it were not for their mistakes – makes life even tougher.

There isn’t a day in my life that I don’t think about him and miss him with all of my heart, and losing my beautiful boy has made me determined to fight for better care for young children, and for their parents to be better informed as to not only the symptoms and dangers, but also with regard to how they should challenge and question the care they receive should they have any concerns.

Cayden’s life was one needlessly lost. I can’t save Cayden, but I can help save others by highlighting Cayden’s tragic story, and my experience of it, to help prevent more parents going through the same devastating tragedies.

My campaign has four clear messages for other parents, which I feel are paramount to protecting children and doing all we can to prevent more tragic deaths. They are;

• Don’t wait for a rash – it is a common misconception that the appearance of a rash is the time to act, but this is wrong and could cost lives. By the time Cayden’s rash appeared it was too late, he become unresponsive in a matter of minutes and by then I’d lost my beautiful boy. Don’t wait for a rash, if your child is unwell and displaying any symptoms relating to meningitis, act immediately and demand answers.

• Never take no for an answer – Given my experience this is probably the strongest message I want to get across to other parents. I’d repeatedly asked doctors if there was something more serious wrong with Cayden as he kept getting ill and picking up colds and infections, and despite him having the lump on his spine at birth I was told there was nothing to worry about. He’d have swelling in his throat, chest infections, cold hands and feet and be shivering yet no action was taken, and he had a bulge on the soft spot at the top of his head. All this and I was told all was ok. Never again would I take no for an answer when asking for more tests of my children.

• Be aware of the symptoms and strains of meningitis

For babies and young children under five years old, who are deemed to be most at risk of the disease, the main symptoms are:

• Agitation and refusing to be picked up
• Cold hands and feet
• Convulsions or seizures
• Drowsiness, floppiness or unresponsive
• High fever
• Pale, blotchy skin
• Rapid or shallow breathing
• Red rash – that does not fade under pressure
• Refusing to feed
• Stiff neck and sensitive to light
• Tense, bulging soft spot on top of their head, known as the ‘fontanelle’
• Unusual high-pitched cry or moaning
• Vomiting

Meningitis must be treated promptly and correctly as its effects can quickly lead to severe and potentially life-changing injuries. Early diagnosis and treatment with antibiotics is a must, so if your child is unwell and displaying any one of the symptoms (don’t wait for a combination), seek urgent medical attention and make it clear that meningitis is your concern.

• Follow your ‘parent’s instinct’ – I always had the fear in my mind that something was being missed, but didn’t feel able to question doctors and medical professionals because they are the ones who are trained to look after people and as patients, we put our complete faith and trust in them. Of course, most of the time doctors do a tremendous job and save many lives, but equally there are too many cases of serious and basic errors costing lives. Hopefully by sharing my story, other parents with concerns over the medical care their children are receiving will not only ask the same questions I did, but see the need to more forceful and demanding when they think something in not right. A parent knows best – sometimes better than a doctor – and I have discovered this in the most devastating of circumstances.

Thank you for visiting this website. Meningitis if isn’t a death sentence it is caught at the right time.

Please be brave and feel able to share your own stories with me here on this site. It can help raise awareness and hopefully prevent other families going through the same agony.

If we save one young life, it will be worth it.

Gaynor McConnell