‘The idea that it would never, could never, happen to you. Followed by the sudden shocking realisation that it was happening, that it was horribly, painfully real.’ 1
Losing a child is every parent’s worst nightmare. What follows is Sarah Menzies’ moving and honest account of losing her daughter Lauren to sepsis in December 2019 at the age of 13. She explains here what happened and her thoughts and feelings since.
I found that Lauren’s death brought with it much guilt for me. Did I miss the signs? Could I have done more? If I hadn’t been at the school fundraiser the night before or in work the next day would I have spotted something? Should I have let her take the Thursday off school? Would it have made any difference? The list goes on and on.
When I went back to Alder Hey to see the consultants after Lauren died my main questions related to when had sepsis taken hold. They could not tell me. They said that one of her lungs was completely ruined, yet she had no cough – a sign of how quickly things had happened. And her heart, which in this kind of lung infection would normally have moved over to the left, had remained in place. All this told me was how quickly sepsis attacks, but not when the start of it had been. When did her illness change from Influenza A and become sepsis? Should we have known when she was lying on the settee complaining about the flavour of her Lucozade? Was it later, when I came home from work and checked her for a rash, chatted to her about how she was feeling and then messaged a friend to say that she was fine and I was just being an overprotective mother?
Eventually, slowly, I realised that even if I could pinpoint the exact point when sepsis began it’s insidious march – the signs I should have noticed – even then it would have made no difference. It would not bring her back. So I pushed it all away, packaged up all the guilt and concentrated on things I could control instead.
During the winter of 2022/23, with the stories regarding Strep-A and lockdown-weakened immune systems in children and a new batch of sepsis stories in the press (it never goes away, five people in the UK die every hour from sepsis, but the stories wax and wane), I read about families similar to ours – parents reeling from the shock of what sepsis can do. I decided then that I should do more to highlight sepsis and that by burying away those feelings I was downplaying the importance of my knowledge.
Lauren had a busy start to her last week at home. She had a Christmas drama production for school, A Journey to the Stable, that was shown to the local primary school children at the church on Monday and Tuesday daytime. She also had ballet rehearsals on Monday night for an upcoming dance show. When she announced on Wednesday morning that she wasn’t feeling very well I put it down to this busy schedule and the need to have a duvet day. It was the time of year when ‘there’s a lot going round’ so I wasn’t overly concerned. I left her on the settee and went to work, her Dad getting home midday to check on her – much to Lauren’s disgust as she liked it when she had the house to herself. The next day, Thursday, she was clearly not 100% but I reminded her that there was an important meeting in school regarding her upcoming ski trip and managed to gently persuade her to go in. School did ring in the afternoon to ask if she could be given paracetamol as she wasn’t feeling very well but that there was no need to collect her, she was fine to finish the day at school. That night after work there was a primary school fundraiser. I went to help and took Lauren’s two younger siblings who still attended the primary school with me, leaving Lauren at home with her Dad. She was still up and Ok when I got back. She then went to bed to get an early night with every intention of going to school the next day.
At about 5am on Friday morning I heard Lauren being sick in the bathroom so I went to help her. She found it very funny that I stepped in her sick. Apart from the vomiting she didn’t seem unduly ill. As I got her back into bed she said something that I didn’t understand. I asked her to repeat it but she said it didn’t matter. I put it down to her being ill but I often wonder if this was the start of something more sinister – was the confusion down to sepsis or is that the tint I’m now putting on her tired state. I do know that this change of symptoms from flu to sickness could have been a sign. But my kids have always been a bit pukey when given the chance so it didn’t strike me as out of the ordinary. I went to get Lauren a hot water bottle and she was fast asleep by the time I returned.
Lauren was still fast asleep when I left for work that morning so her Dad stayed off to look after her. She apparently lay on the settee all day watching Modern Family. I rang at various points to check on her and her dad did mention something odd that she had said but put it down to sleepiness and illness. I was concerned about the confusion but I didn’t realise it could be a symptom of sepsis. It seemed to be a passing moment so I tried to put it to the back of my mind until I got home.
I got home at about 4pm. We were meant to be out with friends that night but I’d already told them we couldn’t go as Lauren was poorly and I didn’t want to leave her with a sitter. When I got home I checked Lauren for a rash, my main concern being meningitis – I didn’t think of sepsis at all. She was still on the settee but I made her sit up and chat to me so that I could check she wasn’t confused. She showed no signs of confusion and my mind was put at rest that it was nothing more sinister than a bug (not realising at the time how sinister that could be) and that I was overreacting. I made tea and Lauren fell asleep again. I remember her breathing was fast and shallow and she was giving little grunts – another sign of sepsis that I was unaware of. When she woke, maybe an hour to an hour and a half after I got home, she seemed confused – not completely but a couple of the things she said made me concerned enough to ring the doctors to see if they could see her. There were no doctors available but they did say that if I was concerned I should ring 111 or got to the walk-in at the local hospital. Hospital seemed a stretch at that point – she didn’t seem that ill – and the general advice at that time was not to go to hospital unnecessarily. I tried 111. Lauren was sick again so after being unable to see a local doctor or to get through to 111 I decided to take her to hospital, fully expecteing to be sent home with at most some antibiotics but possibly a lecture about wasting hospital time.
Lauren walked into the hospital, we chatted to the receptionist, I explained I was a little worried about her and would like to get her checked out. It was a busy Friday, probably about 6pm by now. We hadn’t been waiting long when Lauren’s behaviour became more confused. I expressed my concerns about her to the receptionist and she quickly arranged to get her triaged. Lauren chatted to the triage nurse and said she knew she was in hospital, but when the nurse asked her for her date of birth Lauren got the month wrong. It was then that sepsis was mentioned for the first time.
The survival rates from sepsis are greatly increased through early detection and we are immensely glad that the triage nurse spotted the symptoms when she did to give Lauren her best chance. The doctor that then came to examine Lauren was not convinced – he instead mentioned gastroenteritis. Buoyed by the nurse’s conviction though, I stood my ground, explaining the confusion I had seen. Within four hours of the nurse’s initial identification of sepsis we were preparing to go to Alder Hey hospital with a fully intubated daughter, whose heart had already stopped once due to the level of infection she was fighting.
There are several signs of sepsis, but it is worth remembering that you may only see one or two of these signs. As I discovered in Lauren’s case, your child/partner/loved one may not actually seem that sick. Look out for slurred speech or confusion, mottled skin, a rash that doesn’t fade when pressed, fast breathing or breathlessness, lethargy, vomiting, not passing urine and feeling cold. Extremely high or low temperatures can also be a sign. Sepsis is your body reacting to an infection so there may be signs from the initial infection too. Sepsis actually hijacks your body’s immune system to fight against itself. This means that – paradoxically – the stronger the immune system the stronger the sepsis response may be. The consultants at Alder Hey told me that children and young people, especially those with a strong immune system, often suddenly fall off a cliff in terms of the onset of sepsis symptoms. They mask how ill they are for so long that by the time the severity of the issue is visible it is already an uphill struggle to get them better.
It seemed that Lauren’s sepsis had been caught in time. She was at Alder Hey receiving treatment and showing signs of improvement but then it all became too much for her body to continue fighting and there was no more help that could be given.
The medical profession know that the rates of sepsis survival can be greatly improved with early detection. As you can see from the list of possible symptoms though, knowing what is sepsis and what isn’t can be a minefield, especially for those of us without medical training. However, very little is known about the best ways to treat sepsis. Antibiotics are given to treat the infection and in Lauren’s case she was also given antivirals to treat the Influenza A. It is then up to the patient’s body to fight – a patient who already has an immune system going haywire and attacking itself.
The work being done to highlight the early symptoms of sepsis is without doubt saving lives. But I want to concentrate my fundraising efforts going forward towards research into better treatments for sepsis. That is why we have decided to join with Sepsis Research FEAT in their fundraising initiatives to help ensure better outcomes for all those affected by sepsis.
You can visit our fundraising page here: Sarah Menzies is fundraising for Sepsis Research FEAT (justgiving.com)