Lasting trauma of new born meningitis

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A Leeds mum is raising awareness of meningitis after her family was devastated by the disease. Catherine Scott reports.

Charlie Thompson was just 20 days old when he became gravely ill with meningitis. Charlie now nine months survived, but the affect the diagnosis had on his family is on going.

“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,” recalls mum Kathy from Leeds. “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.”

She took her other children Harry, 10, and George, six, to school, and called the GP and told her about his temperature and felt that Charlie needed to go to hospital.

“She agreed we see the paediatric team at the local hospital. 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. 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.”

Charlie and Kathy, who works in a primary school, were given a room, with isolation stickers all over the doors and within 24 hours bacterial meningitis was diagnosed.

“I couldn’t see my other two children because we were isolated, or my husband Lee.” The next day Charlie had to go to surgery for a line to be inserted straight into him. The strain was e-coli and he needed 21 days of intravenous 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? “

After the surgery Charlie’s temperature gradually started to reduce. “We found out it was an e-coli strain of meningitis, but bowel, stomach and urine samples were negative.” E. coli is the second most common bacterial cause of neonatal meningitis. Women can carry the bacteria in their intestines and vagina, and babies who develop neonatal meningitis caused by these bacteria can develop early onset infection when exposed to the bacteria during delivery

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, Charlie was allowed home although he had to return everyday for IV therapy which finished in February this year.

“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. 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.”

www.meningitisnow.org