Charlie E's story

18th April 2016

Young Charlie, from Bury, Lancashire, woke with a high temperature, but mum Rose thought he was just suffering from a bug that was working its way round the family. However, he had contracted something rather more serious, as Rose recounts here

Charlie E

“Charlie, age 4, woke up at midnight on Tuesday 15th December 2015 with a high temperature.”

“We tried to get it down with Calpol but this on its own didn't really have any impact. We then gave him some neurofen and kept him in bed with us for an hour or so.  He then seemed better so we put him back to bed.”

“His twin sister, Olivia, had been ill the previous week so we assumed he had contracted the same thing, plus myself and my husband Mike, hadn't been feeling too great either and we thought it was working through the family.”

“In the morning he woke at 6am and was moaning. He looked extremely pale (although he does have pale skin anyway) and he had dark rings under his eyes (something I later discovered was a sign of dehydration) and his breathing seemed quite fast.”

Never did I think meningitis

“I put these symptoms down to a viral infection and assumed he would start to feel better once he had been sick. Never in a million years at this point did I think it was meningitis.”

“He then came downstairs and after some more Calpol and ibuprofen he seemed to perk up and managed to eat some breakfast. I then got changed, leaving him to play on my ipad. At around 10am he started to chat less and became quieter. I told him we were going to watch Tim Peake go in a rocket to space. “

“At this point I was on Facebook and let my friend know I was a bit concerned about a 'pinprick' rash which had appeared. This didn't look like a typical viral rash and doubts started to form in my mind. I told my friend I would keep an eye on it.”

“After watching Tim go into space, I noticed Charlie was vacantly staring at the TV but I put this down to him being quite sleepy. Shortly after he was sick and then fell asleep next to me on the couch. I sent a photo to my husband and assumed he would feel a bit better after his nap. Whilst Charlie was napping I noticed what I thought was a bruise on his upper leg, arm and another small one near his neck.”

Looked on the website for symptoms

“I wasn't happy about this at all as I knew this was a potential sign of blood poisoning.  I then started to piece the other symptoms together and looked at the Meningitis Now website for the checklist of symptoms. I then started to panic and called my husband who told me to call my GP.”

“Unfortunately the GP closed at lunchtime and so I was put through to an out of hours doctor, who told me to call 999 if I was concerned or worried at all. I decided to check the rash to see if it disappeared with a glass, but it didn’t.”

“It was at this point that I needed someone with me in the hope that they would tell me I was being silly and that in fact the rash would fade - but it didn't. I then knew I needed to call an ambulance. Charlie then asked to go to the toilet so I had to put my phone on loudspeaker. He wasn't being very responsive and collapsed on the toilet.”

Called 999 for an ambulance

“I called 999 and they told me they would send an ambulance straight away but they then hung up the phone. I panicked and called my husband and told him what was happening. I even called my Dad Steve just to confirm I had done the right thing (he's an ex-firefighter) but by the time I was asking him to come over the fast response car had arrived.”

“At this point Charlie was lying on his side on the couch. He was asked how he was, to which he responded; 'I'm good', which I knew he wasn't. Meningitis was never mentioned when describing his condition, probably as it wasn't confirmed and they didn't want me to panic, but I knew that the man who administered antibiotics to Charlie there and then had given him a fighting chance.”

“The ambulance then arrived around five minutes later. I was told to gather some of his things and I grabbed a few of his clothes and toys, thinking I would be home that night.”

“But we weren't home that night, or the next. Charlie was stabilised at Royal Bolton, who did an absolutely amazing job. They explained everything they were doing, including when they decided to induce him into a coma to protect his airway. He was given lots and lots of fluids, including blood, platelets and plasma and was transferred to the intensive care unit at Alder Hey.”

Antibiotics for the family

“They told me they were treating him for Meningitis B and the associated meningococcal septicaemia (something I wasn't even aware of really until this point) and they then informed Public Health England, who prescribed antibiotics for the family and the childminder.”

“His MenB wasn’t confirmed until two days later when his blood was then sent off for further tests. They looked after him for eight days where he was on a ventilator and where he managed to avoid the use of dialysis. He fought for eight days and when he was brought round from sedation he wasn't the same chatty Charlie I desperately wanted back – but that was understandable given what he had been through.”

“Just the fact he had kept his digits, limbs and his hearing meant we felt incredibly lucky, given what meningitis can do.”

“We were transferred to another ward after eight days and on Christmas Day he was allowed to come home.  It felt amazing to have him home on Christmas Day. His sisters Elizabeth and Olivia had missed him but he would need a lot more time to recover fully.”

Lack of information

“I was massively disappointed to be given absolutely no information about meningitis and its after-effects from Alder Hey Hospital, but fortunately Meningitis Now has sent so much information to us and we have found reading the stories of others helps us to better understand the impact this disease can have and has helped us to cope.”

“Charlie was readmitted to Royal Bolton and then Alder Hey again three days after being initially discharged as he struggled to walk and stand and doctors suspected he might have a bone infection. This meant another week in hospital including New Year, but he was finally discharged with much more mobility as doctors discovered it was just inflammation around his ankle and hip joints and an MMR scan confirmed that the meningitis had scarred his bones.”

“It took Charlie three weeks after contracting meningitis to get back to his cheeky self and a further five weeks to walk and stand properly. There's not a day that goes by that I'm not exceptionally grateful to absolutely everyone who has helped him. I don't know what prevented me from putting him in his bed and to keep him on the couch – it would have been so easy to do that and he may not have been so lucky.”

“The speed at which this disease acts is frightening and the symptoms can be so easily confused with other things. This is why it's so very important to recognise the signs and symptoms quickly. It frightens me when I tell people that they wouldn't recognise many of the signs of meningitis that fortunately me and the paramedics did. I would urge as many people as possible to know the signs and to support the roll out of the MenB vaccination programme, (something I only found out about in hospital) so that others don't ever have to go through what Charlie and our family have been through.”

Continue to be monitored

“Charlie will continue to be monitored by Alder Hey Hospital for the next few years as they keep an eye on his growth plates and despite being discharged almost four months ago we are still waiting for a hearing test appointment. I will be forever grateful that Charlie can say he has survived meningitis and I want him to remember how lucky he is and we are that he is still here despite being hit with such an awful, awful disease.”

“Meningitis Now has been fantastic – sending us leaflets as well as the orange diary/organiser, which has allowed us to keep up to date with Charlie's appointments as well as to make us aware of what he is entitled to following meningitis, including his hearing test which he is still waiting for.”

“The most important leaflet for us was knowing what to expect after being discharged as we were given absolutely no information whatsoever when Charlie was discharged about what to expect, other than that he should have made a full recovery after two weeks of being at home, something which Charlie took much longer to do.  Had we not had the information from Meningitis Now we would have panicked about this and now, after being referred to a bone specialist at Alder Hey, we are happy that Charlie is getting the support and treatment he needs.”

Glass test

Do not wait for a rash

Many people wrongly believe that a rash always appears with meningitis. A rash is a sign of blood poisoning and it can be one of the last symptoms to be displayed. Know the symptoms and trust your instincts. Find out more