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Freya's meningitis story

8th May 2023

Freya was waiting excitedly for her school disco when she started to feel poorly and had to be rushed to hospital with signs of meningitis. Freya’s mum Marie tells their story

Freya's story

“On a normal school night in February Freya woke at 4.30am with a headache, which was not unusual as she suffers with migraines.

She took pain relief and eventually went back to sleep.

In the morning Freya wanted to go to school as it was the school disco that night. At this point she said her head was hurting a little, especially when lights are on, but again that was not unusual when she had migraines.

“At 11am the school called to say Freya was not well and that the paracetamol they had given had not helped her headache. She began to feel sick whilst waiting to be picked up. When Freya’s grandparents collected her, she was able to walk to the car and into the house unaided but when she got into the house, she was sick.

Lethargic

“That afternoon Freya’s Dad, Stephen, collected her and took her home. He had to help her walk to the house - she was very lethargic and was sick again.

“When I got home from work Freya was sleepy and not very talkative, and she didn’t want to answer questions or sit up.

“I realised this was different to her usual migraines and I rang 111. By the time they rang back, Freya wouldn’t open her eyes, and could only mumble in response to questions. They advised we take her to A&E. We decided to drive her ourselves as they said an ambulance could take a while. By this point Freya couldn’t walk and had to be carried to the car.

“Stephen drove us straight to A&E at University Hospital North Durham but on arrival there was a queue and Freya was not responding. Her eyes had rolled into the back of her head.

No response

“A nurse came over, took one look at Freya and took her straight through to an A&E side room. She was laid on a bed and the nurses attempted to get her attention, but there was no response.

“The emergency button was pushed, doctors came in and rushed Freya straight into resus where we spent the next 12 hours.

“On arrival in resus, Freya had a GCS (which measures cognitive function) of 3 which is very low. She was connected to drips and oxygen and she was having seizures. She had no idea what was going on. She didn’t even know who Stephen and I were.

“They started IV antibiotics for viral and bacterial infections as they didn't know what they we’re dealing with at that point. They said they were starting treatment for the worst-case scenario.

Critically ill

“Phone calls were made to the transport team for critically ill patients at the RVI in Newcastle, but it was decided that, due to Freya’s seizures, it would not be safe to move her.

“Eventually Freya was stable enough to move to the Children’s Ward where she was put on the High Dependency Unit with 1-1 care. Although the seizures and agitation continued, they were a lot less severe.

“Once on the ward, to our relief, Freya slowly regained consciousness and was able to talk a little and, over time, began to remember who we were.

“Freya had a lumbar puncture the following day. The results confirmed bacterial meningitis. There was not enough fluid from the lumbar puncture to identify the type of bacteria but Freya was treated for meningoencephalitis due to the severity of her infection.

MRI scan

“Freya’s headaches and photophobia continued for a while. An MRI scan identified two very small blood clots which they said would not need any further scans or treatment as they would dissolve by themselves and they were caused by the swelling on her brain. It explained why her left eye kept shutting on its own which eventually resolved itself.

“My message to other parents is please do not wait for the rash. Freya never did get the rash or a fever! It is scary how quickly everything went downhill and it is hard to deal with the ‘what if’s’.

“The anxious thoughts about what could have happened are something we will have to learn to live with. We are just so thankful that Freya had amazing fighting spirit in her and that she found the strength to battle this awful life-threatening illness.

Amazing recovery

“Freya has had two hearing tests which have confirmed a slight hearing loss in her right ear. She gets tired more easily now, and she suffers emotionally at times. She can’t explain why she is upset, and her processing time and concentration at school isn’t as good as it was.

“But she has recovered amazingly well and hopefully most of these things will improve over time. Physically Freya is doing well, working on building her fitness back up and starting to play football again. We know how lucky we are that we still have Freya with us today.”

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