Stephenie Shaw, a mother-of-three, faced every parent’s worst nightmare when her daughter fell dangerously ill. On World Sepsis Day (13 September), she bravely recounts Florence’s battle with bacterial pneumococcal sepsis.
Until February 2016, we knew nothing about sepsis. For a killer that takes thousands of lives every single year, it’s surprisingly mysterious. Unlike meningitis, which we’re conditioned to know the signs of, sepsis moves stealthily and secretly, often only revealing itself when it’s too late.
Every child has a weakness that flares up when they’re run down. One of our daughters, Florence, then aged five, had always struggled with her temperature and quite frequently it would soar and she’d be lethargic with a forehead so warm you could fry an egg on it.
When she appeared, teeth chattering, at my bedside in the small hours, feeling hot and poorly, I checked her over, popped her back to bed and went to get medicine. When I came back, she’d drifted back to sleep so I stayed for a few minutes, then a couple of hours later, she came back in, scorching hot and shaking so I gave her medicine and she clambered into bed with me, snuggled up like a little hot water bottle.
My husband left to take one of our other children to nursery, leaving Florence and I tucked up. I stayed with her while she slept for an hour or so, then decided to head downstairs to get my laptop to start work. As I left the bedroom, something, and I still don’t know what, made me walk back into our bedroom and open the blinds. The bright light flooded the room and Florence rolled her head away. Immediately, I could see a rash on her face that hadn’t been there during the night.
I went ice cold. Looking at it, I knew it wasn’t going to blanche under a glass, but grabbed a glass and tried it. The movement made Florence groan, but she didn’t wake up and the rash didn’t budge. Panic set in, and having worked for the NHS where I helped spread the word about how to use services correctly and not waste NHS resources, I called 111 instead of 999. I went through the call pathway, getting increasingly fraught as I couldn’t get Florence to wake up. It was obviously serious, so an ambulance was called.
The paramedics arrived and were immediately reassuring. Kind, caring and calm – the perfect combination for a sick child and a terrified parent. My husband arrived home and they went through countless checks with us, including trying to get some Calpol into Florence to bring her temperature down. Despite the rash and Florence being largely unresponsive, there was no sense of urgency and they stayed with us for an hour, eventually coming to the conclusion that it was a bug of some kind and suggested we leave her to sleep it off and see our local GP later. My gut feeling, from the moment I’d spotted her rash, was that it was something serious so we said we’d rather it be checked out.
That journey in the ambulance was one of the most surreal and stomach-churning journeys of my life. Florence was strapped to a stretcher unconscious while I sat, clutching her hand, making small talk with the paramedic about the merits of secondary schools, hoping she would open her eyes. She didn’t.
When we arrived at the A&E, everything suddenly changed. The doctors met us at the door and almost ran with the trolley. We found ourselves in a tiny cubicle surrounded by medical staff, all talking quickly and quietly. Florence was drifting in and out of consciousness and the medical staff were incredible with her; so calm and caring. After a few minutes the first set of blood tests were back and we were told it looked like she had an infection of some kind and she’d need to stay in for IV antibiotics.
We were then moved up to the children’s ward, but had to wait for a private room. I joked to the nurse who was with us that we must be VIPs, when she looked at me and said quietly “You do realise how dangerously ill your daughter is, don’t you?”.
At that point, it felt like our world fell apart. She asked how much we knew and how much we wanted to know. She talked us through what could be wrong with our tiny girl. The general medical consensus was that Florence had either meningitis or sepsis, but it could also be any other kind of infection. Her white blood cells were through the roof and her little body was clearly fighting something huge, but it would take days to establish what it was. They’d started the IV antibiotics within minutes of our arrival at the hospital to be on the safe side but it would be a waiting game to see how the infection progressed.
A consultant came to see Florence and explained more. How we needed to wait. How we couldn’t second guess what would happen. He did say that she may perk up by afternoon but not to be fooled by thinking she was getting better – it was simply the antibiotics taking effect. The best case scenario, he explained, was that the antibiotics had caught whatever it was early and she’d bounce back in the way that children do. We didn’t discuss worse case. We didn’t need to.
Florence stayed asleep and I just sat. I didn’t read, I didn’t check my phone. The only thing I could do was focus on not thinking. As predicted, as the medicines kicked in, Florence woke and perked up, and it was beyond horrific seeing her talk and smile, knowing that she could go dramatically downhill at any point. I held her, we played games, we read books and I held onto her. Tight.
The night passed without any major events, other than a terrified nurse who couldn’t find her little patient who’d scrambled down off the bed and got into my camp bed with me.
I barely slept, terrified that she might somehow slip away in the night. Like when she, and her brother and sister were first born, I couldn’t relax and just kept checking her breathing. However, the sunrise brought about some kind of miracle. She woke up and immediately beamed at me, and it was clear that she was winning whatever fight she was having.
After another day of being poked, prodded and pumped full of antibiotics, one of the consultants said that her recovery was so spectacular that she could go home, but would need to come in every day for a week for her IV antibiotics. He scratched his head and said he couldn’t understand how quickly she’d recovered, compared to how very ill she’d been when she’d arrived. He even admitted that he’d worried she may not have lasted the night. That still gives me shivers.
After a several days of antibiotics (including a collapsed vein and inserting a new canular which I’m still traumatised by now, two years on), her initial blood test results were back. Florence had bacterial pneumococcal sepsis. How she caught it, we just don’t know. She stunned the medical team by her recovery, and by her huge sunny smile which barely wavered. She survived, and survived it intact. She was hospitalised the following week just as a precaution when her temperature shot up, but we’ve had no health issues at all.
While I wouldn’t wish this on my worst enemy, sepsis also teaches you to treasure what you have. Thankfully, very few parents come this close to losing a child, and it’s a sobering, isolating, soul-destroying experience. When you’re in the moment, you focus on soaking up everything you can of your child. Stroking their hair, holding their hand, taking it all in, not knowing if tomorrow you’ll still have them with you. Telling them just how loved and adored they are, in case it’s your last chance.
It’s when they’re home with you, safe and healthy, that you fall apart. We’ve relived it again and again, torturing ourselves with ‘what if’ and maybe. What if we’d let her sleep? What if I’d not opened the blinds? What if the rash had been somewhere else and I’d not spotted it? We overreact to every ache, pain and strain, terrified in case our luck’s run out. And it has a ripple effect – friends and family members were all reeling too. Our little miss was one of the few lucky ones, and for that we will all be forever grateful.
Since our experience with sepsis, we’ve heard countless tales of people who have lost loved ones, lost limbs or survived, battered by the experience and bewildered by its speed and voracity. Young or old, it doesn’t care, we’re all at risk. And we need to know more. We need to know what sepsis looks like. We still have our daughter and so many others aren’t that lucky. I raise awareness of sepsis when I can, and will always shout loud about our experience. It could happen to you. It could happen to your child, mother, brother, sister, partner or friend. If in doubt, ask, could it be sepsis?
Find out more about sepsis: