Sophia was in the second term of her first year and was really into the swing of life as a student at Manchester University. She had made some lovely friends, was enjoying her Spanish and Portuguese course, was playing on the lacrosse team and was about to go on the Ski Society trip to Tignes.
In March 2023, we took Sophia out for Sunday dinner in Manchester for her 19th birthday, she was tired and a little run-down but happy and seemingly well, having spent a lovely birthday week/weekend. First, with her boyfriend visiting, then her friends from home who had nights out with her and her Manchester friends. We left her for our drive home down to Hertfordshire on the Sunday night. I exchanged texts with her early the following evening, and then she went to lacrosse training. Her friends have since reminded her that she complained about feeling very achy after training.
Early on Tuesday morning she messaged me saying she felt sick, soon followed by a text saying she had been sick, and she continued to be sick every half hour or so that day. I remember her saying she felt awful, and I assumed it was probably norovirus. Knowing what I know now, it was extremely dangerous for her to be left to go to sleep that night. I should have made sure that her flatmates were fully aware and would check her for the signs and symptoms of meningitis – and most importantly, check in on her regularly.
The next morning, she messaged me first thing saying she felt horrendous, worse than she had ever felt in her life and she felt really dizzy. I assumed that was because she was completely empty. Again, don’t assume. Now I would FaceTime, check everything, get friends to check or get her to a GP or hospital. I replied and then it was a while before she answered, so I phoned her. I will never forget the eerie silence on the end of the phone each time I said her name, followed by a moaning noise that I can’t describe.
She was trying to talk but couldn’t. Then my phone starting pinging like crazy as a whole series of messages came through from her - none of them legible, just a scramble of letters. She couldn’t type either. THEN, I realised something was horribly wrong. I Facetimed her straight away and was met with a blank staring face, mouth wide open, eyes glazed over. Not a picture I can easily get out of my head. I shouted for my husband and between us we called the security team at her halls and got her to type 111 on her flat WhatsApp group to get her flatmates' attention. They got the message and came into her room and phoned for an ambulance. She was in her bed, unable to move or speak and we know now that if we hadn’t seen her condition and acted then, she could have just died alone in her room, as has so tragically happened to other students.
The next moments are a blur. We had the usual triage questions which we had to answer through the flatmates phone as they didn’t know any of her details and she couldn’t speak. They said she needed to go to hospital, but the ambulance could be hours, so best to get an Uber. But then suddenly, I heard the words “heart attack” and “we’re escalating this” and then “the ambulance is downstairs”. I grabbed a few bits and got in the car for a 3-and-a-half-hour drive to Manchester.
When I arrived, she was still in resus and had been diagnosed with sepsis and put on IV antibiotics. They had put her straight on the IV on arrival and soon after I arrived, they moved her to intensive care. They showed me what looked like small patches of acne on both of her hips and asked me if she normally had spots there. They weren’t the typical bright purple meningitis rash and they were puzzling over it. They suspected meningitis but were unable to perform a lumbar puncture to prove it until the following day because she was too ill. Her bloods were “deranged”, dangerously close to the stage when your body attacks its own organs and shuts down. But the antibiotics were doing their thing and finally, they confirmed she had bacterial meningococcal meningitis B. Fortunately, they had put her on the correct antibiotics from the start to treat this, which saved her life. When Sophia was told this news, she was still in a state of confusion and the only thing she could say was “But I can still go on the ski trip right? It’s not 'til Saturday?” (It was Thursday). At that moment, that seemed to be her most devastating news. She was so unaware of everything that was going on.
In total, she spent 9 days in intensive care and the high dependency unit where, because of the meningitis and sepsis, she suffered from myocarditis and pericarditis (inflammation around her heart) and associated heart attack-like symptoms, septic arthritis in her hip (requiring emergency surgery) and hearing loss. Every day, we thought she was making progress and then something would happen to set her back. Once the surgery was completed, she was able to move to an orthopaedic ward for another 5 days. In the first few days of her stay in hospital, the situation was so precarious that I went into what I call “robot mode”. I didn’t look anything up for fear of what I would find, and just focused everything on Sophia. Now that she was in the normal ward, I felt like she was out of the woods, so started to be brave and search for more information on meningitis and was much better informed. I knew just how lucky we were and how close it was to being a different outcome. So, on day 12, when she complained of a terrible headache and pain behind her eyes and started being sick and her blood infection markers started rising again, I went into full on panic mode. She had already lost the hearing in one ear and I was scared she could lose it in both and would become blind, as I had read this was also a possible outcome. These were the most terrifying moments of my life, just when I thought it was all going away.
Fortunately, the symptoms calmed down. They were unexplained, but we were soon able to bring her back to Hertfordshire for follow-up care. This included spending a lot of time resting and recuperating in bed as she continued with the antibiotics, then a brain MRI, a cardiac MRI, and countless blood tests. Just 6 weeks later, whilst seemingly on the road to recovery, she was readmitted to hospital for a further 6 days with a suspected infection and pericarditis. By this stage, again, with so much knowledge now, it was utterly terrifying for me and devastating for her.
Following this stay, she gradually started to regain her strength and get back to the new normal. Like before, but with a lot of fatigue, so less late nights than a 19-year-old would ideally want. She had cochlear implant surgery in June, which has helped her hearing so much and has helped to reduce the tinnitus she was suffering from after the hearing loss. She had a long summer of recuperating and then returned to University in Manchester in September. She was given the all clear on her heart and told she could go back to playing sport, so she started to play lacrosse again and join in with normal university life, although often returning home early from nights out and going out less often than she would have liked. Christmas felt like a real turning point, and we celebrated the New Year, toasting a year with no more traumatic events. But that wasn’t to be. On her return to Manchester at the end of January, the heart attack symptoms came back and she suffered another episode of pericarditis, for which she is still under investigation. It is not known why this has happened and if it will happen again, so she is living with the constant fear of overdoing it and being struck down again.
18 months on from first being ill, Sophia has gone to University in Spain now for the first part of her year abroad but will need to return for another cardiac MRI and has that fear hanging over her. If only we had known there was a vaccine for MenB to help protect her. This is why it is so important for me to share this story. She received every vaccine that was offered to her within the NHS vaccine programme, including the meningitis ACWY vaccines at school when she was in year 9. But we were unaware, as so many others are, that meningitis B is a different vaccine that the NHS don’t currently have in their budget for teenagers.
