Meningitis in your words

Richard Butler's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Teenager
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Richard Butler

The day my life changed forever started as any other Saturday - three teenage children all busy doing their own thing as it was the weekend.

Richard and his sister Adele went into town to spend their leftover Christmas money in the January sales in 2001.

On their return Richard said he felt a bit ill and thought he'd eaten something dodgy in a cafe in town and went to rest in his bedroom.

As mums do I kept looking in on him, and he said he felt really sick and headachy and was sick on a couple of occasions. He also, an hour or so later, began to experience discomfort of light which started to ring alarm bells within me. I decided to ring NHS Direct as it was a weekend and no doctors were available. The nurse asked me a few questions but was not really helpful, used too much medical jargon and I kept having to leave the phone to run upstairs to get Richard to answer the questions, when he was too ill at this point to help. After too many questions she said maybe ring the doctors in morning as there was an eight-hour waiting time for a home visit, so I left it.

"The consultant explained it had left him deaf with no hope of recovery"

Throughout the evening I kept watch over Richard and felt his head for a temperature but he was drowsy and moaning. I checked his body for a rash but there wasn't one.

During the early hours of morning - at around 2am - I heard Richard get up out of bed and I could hear him crying out in pain holding his head. As I darted out of my bedroom I took one look and realised something was dreadfully wrong, threw on my clothes over my nightwear and woke my husband to say I was taking him to hospital.

We left our two other children at home; Adele was 17 so old enough to stay with her younger brother.

When we arrived at hospital the A&E department was quite full but the glaring fluorescent lights were unbearable for Richard so while I registered him, explaining he needed to be seen urgently, his father tried to shield the lights from him.

We were told a triage nurse would see him but before this happened he collapsed in the waiting area and was taken into a room where he was thrashing round wildly in agony and they couldn't get any blood samples for blood gas as he was too strong.

Eventually they managed to restrain him for long enough to get some samples and we just had to look on scared to death of what was happening around us. My husband had to leave the medical team as he couldn't bear to watch what they were doing.

After what seemed hours he was moved to intensive care where we were told he had suspected meningitis. My legs buckled and I began to tremble with fear. The doctors told us he was gravely ill and said he may not pull through but they would do everything they could.

He was now a grade 9 on the coma scale and all we could do was sit by his bed throughout the night, the following day and again through the night watching different nursing shifts tend to him, taking blood. His veins were like a pin cushion and they even had to use his leg veins.

My sisters raced to the hospital as soon as I rang them - to support me and Richard - and the following day Richard woke from his coma and said he was hungry! When we cried with joy he looked bewildered and couldn't hear us; he said he couldn't hear anything which frightened him and us but we all tried to keep calm after seeing how distressed he was.

The consultant came to see Richard and us to explain he had bacterial pneumococcal meningitis and it had left him deaf with no hope of recovery and would need further assessment when he was well enough.

After two weeks in hospital and a hearing assessment we were told he had total hearing loss in both ears. But miraculously, after a few weeks, he began to hear some sounds in one ear which gradually improved, enabling him to hear at least some things.

Although this has left him needing to use hearing aids for some things he has managed to survive the worst illness and has made up for lost time, and is living his life to the full. I am so proud of him and our family and want to let people know there is hope of recovery; Richard is here to prove that.

My elder sister Helen contacted Meningitis Research Foundation to get some information, who sent a pack which I found very useful and still have. I have raised funds by selling raffle tickets and holding collections at my work to donate to research and I am hoping to do more throughout my life to raise more funds.

Sally-Ann Butler
December 2009