Story told by Camila’s mother, Kaye Daniels
My 4-year-old daughter, Camila, became unwell in November 2022. She went from seemingly perfectly healthy and well, playing and dancing around with friends on Friday 25th November 2022 to waking up that night/early hours Saturday morning vomiting. The vomiting didn’t seem too bad and it was only a few times through to Saturday afternoon when it appeared to be easing off so we presumed she had caught a standard ‘sick bug’ from school and was getting better. Later Saturday evening she started coughing a little but it was hardly anything and didn’t seem much to worry about.
Early on Sunday morning, she was coughing more and the cough sounded strange to me like I could hear the phlegm and she didn’t seem to be coughing it up properly – it looked as if it hurt to cough so much so she couldn’t clear her throat (I hadn’t heard any of my kids make this cough noise before so it didn’t feel right). Her temperature was really high and she was holding her upper tummy/side under her left arm. Her breathing was quite rapid too and I could see her chest sucking in. She was really pale and generally looked unwell I felt really worried and I took her straight to A&E at the hospital.
As time progressed, waiting to be seen she was clearly unwell and this pain in her upper left side was getting worse so much so that every time I tried to lift or move her, she cried out. The doctor listened to her chest and said ‘her chest is clear’ and it ‘sounds like a wheeze caused by a virus’ so prescribed a steroid inhaler to have every 4 hours. He checked her breathing and pulse and though a little high and temp high, he said she likely just had a viral infection which will take time to go away and to give Calpol and ibuprofen to help the fever and the inhaler for the chest wheeze.
It didn’t feel right to me I asked about the pain in her upper left side and he said it was likely caused by the virus, coughing strain, or from vomiting but it was nothing to worry about. He sent us back home and I still felt worried but I didn’t know it could be something so bad and I felt like I had to trust the medical professionals because who was I to question their knowledge?
The next morning, Monday 28th November 2022 was the worst day of my life when we woke to find Camila hallucinating, with black vomit on her, and her skin mottled, rapid breathing, temperature sky high. I was terrified and called 999 but the wait was too long for the ambulance so I drove her to the hospital myself. They took one look at her and took her straight to Resus(Resuscitation Area).
They found a large fluid-filled area in her lung (where the pain was) and started with IV antibiotics. Soon after, they put her in an induced coma and intubated her. We didn’t know what was wrong or what was going on. It was terrifying. She was soon transferred to a children’s hospital, which has specialist paediatric intensive care. There we were told she had an invasive group A strep bacteria in her lung, and that her body had gone into septic shock and caused multiple organ failure. Her kidneys stopped working, she was put on dialysis, she had a drain in her lung to get all the infected fluid out, and her hands and feet began to turn dark and black. We were told she would likely need all four limbs amputated.
I felt so helpless as a mother. It would be more than a week before we even had a shred of any sort of confirmation that she would survive.
Thankfully, Camila responded to the medications and treatments, and she gradually got well enough to be moved from intensive care to a ward after almost two weeks in ICU. She spent around 4 weeks on dialysis and then her kidneys began to work again . Her lung had scarring but began to heal. She lost the top half of all the fingers on her right hand and all the toes on her right foot, some soft tissue and bone under her right foot and she has a lot of scarring to her feet and lower legs. After six weeks in hospital, she was discharged. She was unable to walk at all, and we had to go back twice a week for dressings to be changed on her hands and feet for some time.
After lots of physio and determination, she has learned to walk again though she has to wear splints to support her legs. Now 7 months on, we still go back to the hospital every other week for her skin (some areas aren’t fully healed), regular checkups on her lungs, and kidneys and to see the orthopedics about her feet and legs.
I wish I’d known, back when this all began, to ask about sepsis because looking back now, I feel that she likely had sepsis when I took her to the hospital on that Sunday and I would never have left the hospital that day had I known more. I’m so grateful that Camila is still here as I’m all too aware that this very nearly was a different story.
To learn more about Sepsis and Group A Strep – Click HERE.