Charlie T’s story

7th October 2017

Kathy’s baby son Charlie was just 20 days when he became seriously ill with e-coli meningitis. The brave youngster fought back from the disease but the experience was like a bombshell exploding in their family, Kathy says, and the aftershocks are still happening. She tells their story here

Charlie T

“I first noticed Charlie was unhappy being handled. He had a temperature of 38 and I called 111, who told me to head to the out of hours GP. He diagnosed constipation or a virus and sent us home, even after I raised my concerns over cold hands and feet, plus a high-grade temperature in so tiny a baby. We were sent home.”

“The doctor advised us to contact our normal GP the following day. During the night Charlie was worse. He didn’t want to be touched, was very disorientated and very out of sorts.”

“In the morning, I had an overwhelming feeling and was sick to my stomach that something was badly wrong. I took my other children Harry, 10, and George, 6, to school, and I called the GP and told her about his temperature and that I wasn't willing to wait for a triage appointment.”

Mother’s instinct

“She agreed we see the paediatric team at the local hospital. I don't know what it was, mother’s instinct or whatever, but before setting off, I packed a few days’ worth of clothes for Charlie and me.” 

“We arrived in paediatrics and within 45 minutes he was being held down for a lumbar puncture. I will never forget the noise that came from my son in that room. They said he would be on broad spectrum antibiotics for at least 48 hours.”

“They admitted us. It was packed and I had to breastfeed my son on a chair in the corridor. He was so tiny they struggled to cannulate him. His arms were all used up trying and his only option was his foot. They started him on all sorts. Machines were popping, people were rushing. All the time my heart was breaking for him.”

Isolation stickers

“We were given a room, with isolation stickers all over the doors and within 24 hours there was a positive on his lumbar puncture for bacterial meningitis. I couldn't see my other two children because we were isolated. Or my husband Lee.” 

“The next day Charlie had to go to theatre. The strain was e-coli and he needed 21 days of iv antibiotics. Having to surrender him to theatre and giving him that last kiss nearly finished me off. I crumpled in a heap in the parents’ room and chastised myself for failing to do the one thing a mother should, protect him.”

“I was second guessing if I could have done things differently. Should I have ignored the doctor who sent us home and taken him straight to hospital? They said his surgery was to insert a picc line, as his tiny veins couldn't stay up long enough. They said it was going to take 20 minutes, but 2 hours and 10 minutes later he still wasn't out. I was hysterical. There had been a mix up with parents and they had told the wrong people Charlie was out of surgery.”

Demanded information

“We were sat so long I just lost it and demanded information on him. They did his obs and ever so gradually his temp was reducing. We found out it was an e-coli strain, but bowel, stomach and urine samples were negative.”

“Charlie was born with the assistance of forceps and as a result, got a squashed eye and blocked tear duct. He was started on eye infection drops at seven days old. They suspect this might have been an entry point. It was never definitively proven where it came from.”

“After a week in high dependency, we left and came back every day for IV therapy. Finally on the 13th February, we had our last IV. We've had follow up for eyes and ears, and so far so good. He has some mobility follow up in the next few weeks but every milestone is a worry. He’s a very happy little boy, and we are so lucky to have him alive in our arms.” 

Like a bombshell

“Meningitis was like a bombshell that exploded in our family and the after shocks are still very much happening to this day. I suffer with anxiety, mainly because we couldn't identity its source and it terrifies me it could happen again.” 

“I suffer with ocd mainly with hand hygiene, and I am very selective about who I let Charlie be handled by. I get flashbacks and still can't talk about what happened. I'm envious of Charlie because, at 20 days old, he won't remember. I on the other hand can't move on. I feel guilty, and angry that we were sent home by the emergency doctor. And angry at myself for doing as we were told.”

“It’s been an emotional journey and it will take time for us all to face the demons of our experience, but with the love and support of our family and friends we are moving forward one step at a time and getting back to being the family we were before we were struck by this brutal disease. With the right support we will continue to grow stronger. And I hold on to the fact that, despite everything, in the end it was a positive outcome for Charlie and I’m so grateful for that.”