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Reuben S's story

25th November 2017

Louise, from West Bridgford in Nottinghamshire recalls the day her two-year-old son Reuben came down with meningitis, on the tenth anniversary of him becoming ill. Despite lifelong after-effects Reuben is now living life to the full

Reuben S's story

“Reuben was a typical two year old boy - noisy, energetic and lots of fun.

He had just turned two the month before and was getting used to being a big brother to Isaac who was 11 weeks old.

“At the beginning of the week he had a cold but rather than shake it off quickly it was lingering. By the Thursday I decided to take him to the doctors as he had a high temperature, but after examining him it was put down to a virus.

“The rest of the day he lay on the sofa, topped up with Calpol - I do remember he kept pulling at his neck but I put that down to him having a sore throat.

“That evening he deteriorated, was unresponsive and after a call to 111 he was taken to hospital. He was examined but perked up and so we were sent home.

A bit of a blur

“The next two days passed in a bit of a blur; he stopped being able to walk, he then lost the ability to stand. I always think that I should have been more alert to the idea it was something more serious but I think the reality of having an 11-week-old baby clouded my judgment and I didn’t want to bother the doctors a third time.

“That all changed on the Sunday as he was no longer able to even sit up. I convinced myself it was a bad case of flu and he was just really weak but was certain he needed medical intervention.

“We were seen by the out of hours doctor and I was told that it was just a virus but if it made me feel better they would send me home with antibiotics. Something inside kicked in and I refused to accept he shouldn’t be seen by the hospital and so we were sent to A and E.

“Another four or five hours later and we were still no further. I felt no-one was taking us seriously. Finally I sought out the lead consultant and demanded that my son’s illness was taken seriously. It turned out not all the information was being passed on and so they decided to do a blood test.

Piercing scream

“Suddenly the attitude towards our situation changed. A marker in Reuben’s blood that should have been in single figures was over 200. One of the doctors then moved Reuben to get him to put his chin on his chest; he did this repeatedly and each time Reuben let out a piercing scream.

“I suddenly realised what they were now thinking: Reuben had meningitis.

“He was rushed in for a lumbar puncture. I was advised to not come but I couldn’t bear the thought that he might be in a room with strangers so I watched as three people held him down whilst the lumbar puncture was given. Even to my own untrained medical eye I could see that the fluid was incredibly cloudy and at that point I was told that he was very poorly and it was meningitis.

“I still don’t know to this day how he managed to fight it for this long and when we found out it was bacterial and one of the worst forms, pneumococcal, we realised we were extremely lucky.

Acquired brain injury

“The road to recovery has not always been easy. Reuben has an acquired brain injury which presents very similar to autism. He is very impulsive, struggles with significant sensory issues and has completely lost his hearing in his right ear. He also suffers from very debilitating migraines and of course had to relearn how to walk.

“Three years ago he was fitted with a bone anchored hearing aid which has made a huge difference not only to his hearing but also to the way he is able to interact socially and at school. He is however living life to the full, enjoying playing rugby and water polo and has adapted well to secondary school.

“We know we are extremely lucky with how things have turned out and are proud of how he is maturing. His life has been changed forever by meningitis but with challenge comes opportunity and he is making the most of this.

“I was recently asked to remember when I had felt a moment of joy. It was easy to recall. I was in the hospital whilst he was ill and popped into the kitchen to make a cup of tea. Suddenly I heard Reuben’s voice singing ‘Twinkle Twinkle Little Star" at the top of his voice. He had come through the other side and for that we will always be grateful.”