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Stories

Tommy B's story

14th December 2023

Rebecca, from Merseyside, had no idea her baby son would be diagnosed with a rare form of bacterial meningitis.

Tommy's case study frame

“I’ll never forget the words he said to me; “I am so sorry, but your son has bacterial meningitis and sepsis.”

“It all started with Tommy, who was four months old, being a little bit ‘off’. He had a few bouts of diarrhea and was quite irritable. I thought he might have a virus or something minor. We got home that night and I put him to bed as normal.

“I woke up in the early hours to hear Tommy moaning in his sleep. I tried to give him a bottle but he didn’t want to take it. I tried to console him while he was in his cot but he kept moaning and crying so I picked him up.

“To my surprise he was boiling hot to the touch. I took his temperature straight away and it was 40.3 degrees. I got him some Calpol and lay next to him to keep an eye on him.

High heart rate

“Not even 20 minutes later Tommy started breathing extremely fast, and his monitor started sounding an alarm due to his high heart rate. I rang NHS 111.

“The operator said that they would send an ambulance so we waited. I comforted Tommy and tried my best to make him more comfortable. An hour later there was still no ambulance and his temperature had gone up to 40.8 degrees.

“I rang 999 and before I even got off the phone the ambulance had arrived. Tommy was checked over by the ambulance crew and had started vomiting.

“The ambulance crew agreed he was very poorly but thought it might be a virus. I was wondering whether it was just an ear infection or a bout of gastroenteritis. The ambulance didn’t even use the blue lights so I wasn’t initially too concerned.

“As soon as we got to the hospital I was told to wait at the reception to have Tommy checked in. The triage nurse came out while I was waiting, took one look at Tommy and rushed him round to emergency.

Unconscious

“Within 5 minutes of my little baby being moved to emergency he was unconscious. They tried everything to wake him up but even getting his blood drawn didn’t make him flinch. The only time he showed any signs of consciousness was when they tried to move his neck to his chest.

“This sparked an immediate concern for meningitis and he was moved over to resus. He started having apneas where he stopped breathing and they had to stimulate his chest so he would take a breath.

“I was in complete shock. I had no idea how this had happened to my baby. They still had no idea what was causing his symptoms, but they started the sepsis protocol and pumped him full of antibiotics and fluids.

“A few hours later the PICU consultant came and assessed Tommy. Whilst he was being assessed for intensive care he opened his eyes, which was amazing. He was still really lethargic and irritable but at least his eyes were finally opening after four long hours.

Never forget

“Tommy was moved to a ward where he was monitored overnight. We waited for his blood results, and they did a lumbar puncture. The next morning a consultant came into Tommy’s room and asked me to sit down. I’ll never forget the words he said to me; “I am so sorry, but your son has bacterial meningitis and sepsis”.

“I burst into tears and asked if he was going to be okay. They told me that they didn’t have an answer but they were going to do everything they could for him. They reassured me that it was a good sign that he was in and out of consciousness (instead of just unconscious).

“They managed to get steroids into Tommy’s system within the first 24 hours which was crucial to protect his brain.

“For the next two weeks we were in the hospital. Tommy was pumped full of antibiotics and fluids. His whole body swelled up due to the steroids and he was in a lot of pain. He kept having episodes of bradycardia (slower than average heart rate) due to the medication he was on and he was having little seizures.

Regressed

“Because of this the doctors did an MRI scan of Tommy’s brain. This came back clear apart from the meningitis, which was a relief. During this time Tommy regressed a lot with his development.

“Tommy had been rolling and laughing before the meningitis but, even after he got better, he stopped doing those things.

“The doctors’ main concern was with Tommy’s hearing but he passed the hearing test with flying colours!

“After a fortnight we were discharged. We had a lot of follow ups with immunology as they did extensive immune system testing which came back normal.

So proud

“Tommy has a long road ahead with pediatrics due to a developmental delay. He isn’t where most babies are at his age but that’s to be expected with all he has been through.

“We are so proud of our little warrior and so grateful for all the staff at Alder Hey hospital for taking such good care of him, and continuing to keep an eye on him.

“I still worry every single time he develops a fever and I’m always on edge when he gets poorly. I’m so grateful every single day that he survived with no serious long-lasting effects.”

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