‘Trust your gut always as a mum…if we had left it just a few hours later we would be telling a very different story right now.’
My name is Alison Mckay and I live near the sea in East Sussex with my three kids aged 15, 8 and 5. My son Freddie is the 8-year-old and he has autism. He is a very good, happy, loving little boy – everyone that meets Freddie adores him. We call him our ‘mathematician man’ or our ‘Milky Bar Kid’ as he loves numbers and looks a little like him.
On the 5th January 2024, Freddie woke up as normal for school and went in fine – his normal self, happy and ready for the day ahead. By 10.30am I was at work and got a call to say that Freddie wasn’t himself – he was shaking, pale and not wanting to join in. I got his dad Shaine to collect him, at which point he started to vomit and had diarrhea, which at that time of year I thought was just a normal bug. So I got his dad to take him home and give him Calpol and fluids. But he then went downhill very fast! An hour or so later Shaine rang again to say that Freddie’s eyes looked strange, at which point I had a really bad feeling and rushed home.
As soon as I walked in I took one look at him – his lips were blue – and in my heart I knew something was really off so we took him straight to A&E at the Conquest Hospital in Hastings. My friend Anna was working there as a staff nurse. She said that it was very busy and that she would go and see how far down the queue we were. Freddie then needed the toilet but as he couldn’t walk his dad carried him. He then had an accident on his dad so I had to go and get a gown as I had rushed to A&E with nothing. I left Freddie collapsed in the toilet with Shaine and shouted for Anna’s help at which point the doctors arrived and carried Freddie straight through to resus.
After this everything is a bit of a blur – I was in complete shock and didn’t know what to do. Freddie’s body was shutting down and he was very sick indeed. And that’s when they told us that they suspected that he had sepsis. I didn’t know much about sepsis – I had heard of it but had never experienced it till Freddie got so poorly. With Freddie’s autism he didn’t really – and still doesn’t – understand what happened, although I’ve tried to explain a little.
Once they identified sepsis as a possibility the team started treating him straight away. They then told me that he was very poorly indeed and that he would need to be blue-lighted to the PICU (Pediatric Intensive Care Unit) at Evelina Children’s Hospital in London. Freddie was still responding at this stage but you could see how fast he was going downhill – the doctors were doing everything they could and had everyone there to help save him. They were truly amazing.
They then put Freddie in an induced coma. At that point I don’t think anyone was still completely sure what they were dealing with. We then had to go in the ambulance with the team from St Thomas’ hospital. It wasn’t until a day or so later that Freddie’s results come back showing that he had had a Strep A infection. Because he is autistic he masks a lot, so nobody knew that he was unwell – he hadn’t complained about anything. The infection had got into his system and his body had massively overreacted, leading to sepsis which had deteriorated into septic shock.
Freddie needed a lot of different medications to help him get better. After a while he began to make positive progress, slowly coming off everything, and we were able to bring him round after getting the all-clear that there was no lasting damage. I realised how lucky we had been and how my quick thinking and getting him to A&E when I did had probably saved his life. Anna told me that she didn’t think he’d be coming home, and, in all fairness, I think we probably all felt the same. But against all odds he survived and is doing so well now.
When Freddie came round, he couldn’t walk, talk or do anything. The doctors ran lots of tests – including an MRI and a brain scan – and he was then put on other medication. They thought he might have encephalitis but within a week or so he had made a wonderful turn-around on the meds. I will forever be thankful for everyone that saved my son and looked after him. I can’t remember now how long we were in hospital for – a few weeks certainly. His dad stayed with my daughter in Ronald McDonald house as we were miles away from home, while I stayed by Freddie’s side every minute – I couldn’t leave him.
If I had to say anything to other parents – honestly, I know everyone isn’t as lucky as us and I am forever grateful – trust your gut always as a mum/parent/carer. Because if we had left it just a few hours later we would be telling a very different story right now. Just drop everything and get to your nearest hospital.
Freddie is now back in school and doing amazingly well. He did suffer with body pains for some time afterwards and he has also suffered from some post-traumatic stress and gets tired very easily. He is having some play therapy at school. His moods can be different now, but he is otherwise fit and healthy – back to playing with numbers – and is getting so much better all the time.
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Freddie’s story illustrates one of the key aspects to be aware of with sepsis in children. That is the vital importance of parents trusting their own instincts – as Freddie’s mum Alison did – and getting urgent medical attention for their children. Freddie’s condition deteriorated very quickly and it appears that Alison acted in the nick of time to ensure the best possible outcome for her son.
Another key point that Alison highlights is that sepsis is particularly difficult to diagnose in people with neurodevelopmental disorders such as ASD (autism) – as Alison explained, a propensity to mask or not verbalise how they are feeling means that patients may be critically ill before anyone becomes aware of the problem. It is more important than ever than parents and carers of people with autism are aware of the key symptoms and of what to do if they are concerned. Read more about the key symptoms of sepsis in children here.
Confusion is a key symptom of severe sepsis in adults and it is just as important that people understand the need to advocate on behalf of others if they are seeing alarming symptoms and a condition that is deteriorating rapidly. You can read more about the key signs of sepsis in adults here.