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 wasn't 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 of school, would it have made any difference? The list goes on and on.
When I went back to Alder Hey to see the consultants my main questions related to when did sepsis take hold. They could not tell me. One of her lungs was completely ruined yet she had no cough, a sign of how quickly things had taken hold. Also, her heart, which in this kind of lung infection would normally have moved over to the left had remained in place. All this showed me was how quickly sepsis attacks, but not when the start of it is. When did her illness change from Influenza A and become Sepsis. Should we have know when she was led on the settee complaining about her Lucozade flavour? 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 make no difference. It would not bring her back. So I pushed it all away, packaging up in all the guilt and concentrated on things I could control instead.
This winter, with the stories regarding Strep-A and lockdown weakened immune systems in children, which have led to 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 denying 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 Weds am 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 is "a lot going round" so I wasn't overly concerned. I left her on the settee and went to work, her Dad getting home mid-day 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 reminder her there was an important meeting in school regarding her upcoming ski trip and managed to gentle chide her to go in. School did ring in the afternoon so ask if she could be given a paracetamol as she didn't feel very well, but 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, took Lauren's two younger siblings who still attended the primary school and left Lauren with her Dad at home. She was still up and Ok when I got back, but 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. I went to help her. She found it very funny that I stepped in her sick, but apart from the vomit didn't seem unduly ill. As I got her back into bed she said something 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 onto her tired state. I do know that this change of symptoms from flu to sickness could also have been a sign. But my kids have always been a bit pukey when given the chance so it did not strike me as out of the ordinary. I went to get Lauren a hot water bottle and she was fast asleep when I returned.
Lauren was still fast asleep when I left for work that morning her Dad staying off to look after her. She led on the settee all day watching Modern Family. I rang at various points to check on her. Her dad did mention something odd she had said, but put it down to sleepiness and illness. I was concerned about the confusion, but did not realise it could be a symptom of sepsis, and as it seemed to be a passing moment I tried to put it to the back of my mind until I got home.
I was 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 be assured that 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 how sinister they could be) and that I was overreacting. I made tea and Lauren fell back asleep. I remember her breathing was fast and shallow and she was giving little grunts, another sign of sepsis that I did not know. 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 if I was concerned to 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, in fact Lauren's dad was still trying to get through to them when I set off to take her to hospital.
Lauren was sick again and after being unable to see a local doctor or to get through to 111 I decided to take her to hospital, fully expected to be sent home with, at the most, some antibiotics, but possible 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 from 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. However, buoyed by the nurses conviction I stood my ground, explaining the confusion I had seen. Within 4 hours of the nurses initial identification of Sepsis, when she had talked to Lauren, we were preparing to go to Alder Hey hospital with a fully incubated 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, and, as I found 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. Extreme 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 highjacks your bodies immune system to fight against itself this means that paradoxically the stronger the immune system the stronger the Sepsis response. The consultants at Alder Hey fold me that children and young people, especially those with a strong immune system, fall off a cliff in terms 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, but as you can see from the list of possible symptoms, 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 given antivirals too to treat the Influenza A, but then it is up to the patients body to fight it. This is 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 to the research for better treatment methods of Sepsis.
That is why we have decided to join with Sepsis Feat in their fundraising initiatives to help find better outcomes for those affected by sepsis
Please see our fundraising page here:
Sepsis Research FEAT was established in 2013. It was born out of the experience of our founder, a sepsis survivor who also suffered terrible personal loss from a condition that has been called the ‘hidden killer’. At the heart of our charity is the funding of world-leading research designed to improve outcomes for sepsis patients and their families and to save lives – here in the UK and across the world.
Huge progress has already been made. More is urgently needed. Please support us in our vision to #stopsepsisnow.