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Jack D's story

18th January 2020

When Jill’s newborn baby fell ill in July last year she was told it was “just viral meningitis”. Initially relieved, she started reading up on it and realised there was no “just” about it. Jill, from Lenzie, near Glasgow, told us their story

Jack D's story

“On 12 July last year my 12-week-old baby, Jack, started to become quite grumpy and irritable.

As with most parents I put this down to the start of teething as he displayed no other symptoms.

“By Sunday 14 July, I thought he seemed a bit happier. It was a warm day and we went strawberry picking. Looking back now, though, it was clear that he couldn’t stand the sunlight in his face - even more so than usual for babies. That evening he developed a temperature of 39. We phoned Out of Hours and were told to take him up. The doctor noticed a rash and diagnosed him as having a virus and told us he would be better within 7-10 days.

“On Monday 15 July, he seemed worse, he was unhappy, wasn’t taking milk and his rash was spreading. My husband came home early from work and we called Out of Hours again (it was a bank holiday in Scotland or I would have taken him to my GP). They said to take him up to Out of Hours. When we got there, the doctor said that she wanted him taken up to the children’s hospital straight away. We took him straight up and he was seen immediately.

Staying in hospital

“Straight away we were told that due to his symptoms, he would be kept in for at least two nights whilst they ran tests.

“Within two hours of being at the hospital he was having a cannula fitted so they could give him IV antibiotics and put him on a drip. They couldn’t get a cannula in his hands or feet and as a result he had to get one inserted in a vein in his head.

“Once the cannula was inserted we were then asked to leave the room so they could perform a lumber puncture on him.

“Once the lumber puncture had been completed we were moved to a ward and given a private room. Over the next couple of days, he was given regular antibiotics and Calpol for his fever. He was upset, he would cry for ages clearly distressed and there was nothing we could do for him. His temperature would go down but then would suddenly jump back up.

“As time went on we started to know that it wasn’t likely to be sepsis, or bacterial meningitis - the two main things that strike fear into you. Instead we knew that the likelihood was he “just had a virus”.

“On Wednesday morning the doctor came into see us around 11am. She told us that they finally had a positive result - she explained to us that he had contracted the enterovirus and that had led to him developing viral meningitis.

It's just 'viral meningitis'

“Initially our thoughts were "Oh ok, at least it’s just viral meningitis" – even when we phoned relatives to tell them what was wrong with him we again said "No it’s ok, it’s just viral meningitis".

“We got home on Thursday 18 July after three nights in the hospital. He still had a slight fever but that was ok as we now knew what was causing it. His milk intake was still low, but it was enough that they were happy for us to go home. There was no follow up appointment as again it is ‘just viral meningitis’ so it’s just a case of nursing him better.

“Once home I finally took the time and sat down and read about viral meningitis. That was the point where it hit me: yes he had ‘just viral meningitis’ and yes it’s less severe than bacterial meningitis; however, the fact is he still had meningitis, he still had an inflammation of the lining of his brain and spinal cord. That’s when I wondered why there wasn’t a follow up appointment, surely there should be some sort of after support.

“It took me several weeks before I completely stopped analysing every single little thing that Jack did, but even now I worry that maybe he isn’t babbling as much as I thought he might do by now and whether this is this caused by the viral meningitis? In reality, he’s babbling away quite happily, but my point is I still analyse everything he does! Furthermore since his viral meningitis, Jack has had croup, bronchiolitis, ear infections and a mild dose of the flu. Not to mention the usual colds that babies get.

“Up until recently I put this down to him just being a baby with an older brother bringing home lots of germs from nursery. It’s only as I’ve read other people’s accounts of viral meningitis that I realise viral meningitis could still be having an impact on his little body and perhaps lowered his immunity. Again, this isn’t something that was ever discussed with us, this is me simply trying to put the pieces together.

Following your instinct

“I am so, so glad that we followed our instincts and didn’t just go with what the initial out of hours doctor said - she wasn’t wrong, it was a virus and yes it would get better in 7-10 days but it was more serious than that.

“I believe there is a lack of knowledge and understanding about viral meningitis and I feel now very passionate about trying to raise more awareness about viral meningitis so that others don’t do what I did and go "Oh it’s fine, it’s just viral...".