Meningitis in your words

Luke 's story

  • Location: England
  • Categories: GAS (Group A streptococcal)
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery

This is a story about Luke Tamsett, who has now just turned 7 years old. I speak in the present tense because this story ended well and is intended to give hope to any family that has been through what we went through.

Luke was born on November 20th 2008. He is the brother of Reiss, who was 3 at the time. Within 10 weeks of birth, Luke fell very ill. Initially he had a high temperature and slight diarrhoea. He was also off his bottle. We phoned NHS Direct and gave Luke Calpol, which helped in settling him.

On Thursday Jan 29th January, Luke was still running a high temperature and had a tummy rash. He started vomiting periodically. Around midday I noticed a slight twitch in his right eye and right leg. 

My wife, Clare, took Luke to A&E at Queen Mary’s Hospital in Sidcup. He was seen immediately and they said he had a head cold and gastro-enteritis. He came home but had bad diarrhoea and wouldn’t sleep. He was moaning, irritable and seemingly in pain. He projectile vomited 6 times. He looked terrible and still had a rash (that disappeared under a tumbler.) His cry was high pitched and he was distressed. We rang NHS Direct again, who advised us to go back to A&E, after hearing his cry.

"They chillingly told us unless they operated, Luke would probably die; his little head was cut open from one ear to the other."

Upon arrival at A&E at 7pm, they put a cannula in straight away, with a drip and antibiotics, as they feared meningitis. An hour later he started to fit on the right hand side only. Dr Khan injected him with Lorazepam, which stopped the fit but knocked him out. A CT Brain scan & Chest X-ray showed no abnormal problems. He was admitted to the ward at 1am.

The next day Luke was still too ill for a lumbar puncture and was on 4 antibiotics and Phenytoin for the fits. On Saturday 31st Jan it was confirmed Luke had Group A Streptococcal Bacterial Meningitis and Septicaemia. His medication was changed accordingly.

He continued to have fits, Diarrhoea and he put on 1kg through fluid retention. He needed a blood transfusion to combat Anaemia. After an awful week, Luke finally started to show signs of improvement and it looked like he might be coming home. But this was short-lived. After another fit and CT scan, a dark area was found on one side of his brain. 

We were immediately sent to the High Dependency Unit at Kings College hospital in an ambulance. They told us the infection had caused a collection of pus on his brain. They chillingly told us unless they operated, Luke would probably die. The following day, Tuesday February 10th 2009, was the worst day of our lives. Luke endured a 5-hour Bilateral Craniotomy where his little head was cut open from one ear to the other and the pus was cleaned from the surface of his brain. Residual pus was to be cleared up through a new antibiotic (Ceftriaxone) He was transferred to intensive care in a great deal of pain and was given another blood transfusion and morphine. 

After 2 nights he was moved back to HDU and saw various Occupational and Physiotherapists. We were categorically told Luke would not get through this without lasting after effects.

He was transferred back to Queen Mary’s in Sidcup for his final recovery. A month after his illness started, Luke finally came home. His aftercare (Phenytoin, daily antibiotic injections at the hospital, community nurse visits, therapists, consultants) continued until the end of March. 

Fast forwarding to today, Luke is now a healthy 7-year old boy, doing well at school, regularly playing football and showing no side effects from his terrible ordeal (other than a head scar).

The challenges and emotions we faced across this period are too long to list here. But we were always optimistic and positive when all was going against us. We feel like we are one of the really lucky families. It brought home what an amazing professional job the nurses and doctors of the NHS did. Without them and their quick actions he wouldn’t be here today. He truly is our little miracle boy.

Mark Tamsett
November 20th 2015  (Luke’s 7th birthday)

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