Meningitis in your words

Dahlia Wilson's story

  • Location: England
  • Categories: Viral
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Epilepsy - Seizures (Fits)
Dahlia Wilson

Before I begin to write about our experience with this cruel disease, I would like to explain why I am choosing to do this.

I am not trying to attract sympathy. I am not trying to compare our experiences with anyone else's. I am doing this for two reasons. The first is to encourage people to talk about it, and read about it, and most of all look out for it! The second is sort of as a self-care thing. I think it is important to talk about things for yourself as much as anything else.

It was a Friday evening when I really started to notice something didn't seem right with Dahlia, who was 4 weeks old. I had been told for a while that Dahlia had Colic. I didn't doubt that, so on the Friday night when Dahlia wouldn't stop screaming and wouldn't feed properly I put it down to that. It was a long night. She would sleep for ten minutes, then wake and scream for what felt like hours. This all started at about 6:30pm and was still going on when it was time to take Ted to swimming class at 8:30am. I didn't want Ted to miss his class so I bundled the girls up into the double stroller and off we went. However, I was becoming increasingly concerned. Dahlia had felt very warm all night, and although she normally settles well when she is in her stroller this particular Saturday morning walk was a nightmare. Every time we went over the slightest bump, up or down a curb, anything, she would scream even more.

When I was sat in the leisure centre trying to keep the girls entertained for 30 minutes I decided to have a quick Google of Dahlia's symptoms. Meningitis kept popping up, but honestly I didn't think it was. I felt her hands, they were cold. I felt her body, it was hotter than before. The next time I changed her nappy I had noticed that her skin had become mottled all over her body.

When we got back I called NHS direct. Honestly I just wanted some advice because she was so little that I couldn't give her anything to bring her temp down (which was now 38.6). I expected to be told to call my GP and ask for an emergency appointment. They asked me generic screening questions. I'm not sure we finished the questions before the lady on the phone told me that she was going to speak to someone. When she came back I was made aware that because of some of my answers, and how young she was, she would be sending out an ambulance to check her over.

When the paramedics turned up they didn't seem immediately concerned. They did lots of generic tests and informed me that they would have to take her in to get checked by a doctor because she is under one. She was clearly distressed, but still even at this point there was no mention of, or worry about it being meningitis or anything else serious. The one paramedic thought maybe colic, maybe constipation.

Dahlia settled in the ambulance thankfully. I felt awful having to leave my two other children, who are 6 and 2 (even though they always have an awesome time with their grandparents).

When we arrived at the hospital we were taken in to paediatrics A & E. The wait to be seen was 3 hours! I was anxious, bored and underprepared. Also, reruns of the Chipmunks series playing on the TV behind you gets old very fast.. We were eventually called in.

The doctor took a general look at Dahlia, asked lots of questions, and told me that we had to wait in a waiting area to be checked by his colleague (who was in a higher role than him) as she was under 3 months. At this point I really expected to be going home with my baby within the hour. However this next Doctor wasn't as happy with Dahlia as all of the others had been. She was the first one to recognise that Dahlia had a temperature. She seemed quite concerned with how pale Dahlia now was, and the mottled skin. She wanted to do tests. Blood, urine, lumbar puncture. I naively asked if we would be going home tonight. No.

"Now that I look back, that was probably the first time meningitis was at the front of somebody's mind."

Now that I look back, that was probably the first time meningitis was at the front of somebody's mind, but it still wasn't a thought of mine. I felt awful, but I couldn't be in the room when they did the cannula and the lumbar puncture. I stood outside. I cannot bear the thought of how much stress our poor baby was under. Not only was she in a lot of pain, but these doctors and nurses were doing this. I knew I had to let them get on with their job though. I stood outside and tried to hold it together. I couldn't. Hearing her just made me cry. I was informed that they would start her on antibiotics before any results come back, in case she is fighting any kind of infection. Still, it didn't click in my head why.

The next 48 hours would really test me. Nurses came in every few hours to give her IV antibiotics. This in itself was stressful. The machine that administered the drugs beeped and stopped if Dahlia moved and hit the tube, to which I had to press my emergency call button. At one point I wanted to settle Dahlia so thought I’d leave our private side room and walk up and down the corridor with her, as I had seen other people doing it. I was told I was not allowed to leave the side room. Clearly I should have realised that we were essentially isolated because of the meningitis risk. I had called my husband to give him updates a few times and we had agreed that due to his work schedule he should stay home and rest so that he can bring me what we need later in the day. We discussed what they could be testing for. We discussed the possibility of meningitis but both agreed that it probably wasn't. This didn't last for long.

"It pained me to think of the pain she must have been in, and that we could lose her to this horrific disease."

That evening another doctor came in. She started talking about lumbar punctures, blood cell counts, and as she did she threw in there that Dahlia did in fact have meningitis. It was another couple of minutes of the doctor talking about outcomes and after effects before my brain let it sink in. I tried not to cry yet, but I did. Suddenly as she left the room I was filled with the dread that I would need to call my husband to tell him. We cried together. He rushed over to us. We sat together and cried some more. We didn't know how serious it was yet, we just knew of horrors and risks and saw our helpless baby girl just lying there. Totally not herself. It sounds horrendous but I didn't want to look at her. I didn't want to hold her. I loved her so much that it hurt. It pained me to think of the pain she must have been in, and that we could lose her to this horrific disease.

The nurse informed us that one of us had to go home so I stayed. Unfortunately my husband contracted tonsillitis and that would be the last he was allowed to see of either of us until we came home. I spent the next 2 nights and 2 days in that hospital room. We were so thankful to be given the news that it was viral. It was the lesser of two evils. However it was still an evil. There wasn't much we could do for her in hospital, so after 48 hours we were discharged under the conditions that we went back if anything got worse.

So we went home and tried to keep Dahlia in as little pain as possible.  According to "The after-effects of meningitis usually reflect damage to various areas of the brain. While the after-effects of viral meningitis are not usually as severe as those of bacterial meningitis, they can still be long-lasting. Commonly occurring after-effects include: • Exhaustion • Headaches • Memory loss • Anxiety • Depression • Dizziness/balance problems • Hearing difficulties. Various other after-effects have also been reported including personality changes, aching joints or limbs, sight problems, learning difficulties, speech and language problems, noise intolerance and light aversion. Because viral meningitis is very rarely life-threatening, many sufferers feel that their illness is taken less seriously and the after-effects they experience are not always acknowledged."

It will be hard to tell if Dahlia suffers short or long term effects of meningitis. The fear that sat with me when I was given the news will stay with me forever. "You have a very, very poorly baby..." "At 34 her cell count is very high, which is worrying..." I could have ignored the symptoms thinking it was nothing.

I am so thankful to all of the professionals involved. It is now 6 weeks later. Dahlia is a smiley 11 week old. She is currently under investigation for possible seizure related movements which we have noticed since her having meningitis.

Cassie Wilson
October 2019

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