Reuben Savage's story

The weekend before Reuben became really ill he had a cold, which was nothing unusual given that he was just over two years old and attended a nursery four days a week.

Later in the week he was sent home having been sick and by Thursday, as he was running a temperature, I decided to get him checked out by the GP. They concluded that it was a virus and the usual advice was given regarding regular Calpol for his temperature. 

Later that day his condition deteriorated, he just lay on the sofa. I also remember him distinctly holding his neck and stretching it out - I presumed he had a sore throat and had not recognised this as one of the meningitis symptoms. 

When my husband came home we gave Reuben a tepid bath and, when he failed to respond, we called NHS Direct, who in turn phoned for an ambulance. In A&E he was given Calpol and Nurofen, his temperature went down and he started too respond to a play co-ordinator, so we were sent home. 

The next couple of days passed with a blur (I was also looking after our 11-week-old baby) but his condition worsened. Friday he stopped walking, Saturday he could no longer stand unaided and when on Sunday he stopped being able to sit up we again contacted NHS Direct. We were sent to the out-of-hours GP and our experience here was particularly bad; looking back no checks for meningitis (i.e.getting Reuben to put his chin on his chest), were carried out and but I eventually convinced the doctor to send us to the hospital for a second opinion. 

Again meningitis didn't seem to factor in anyone's - or our own - thoughts on what was wrong and we kept being told it was probably a virus. Finally the decision was taken to do a blood test, a marker that should have been under five for his age was over 200. At this point they tried putting his chin on his chest and each time they did he screamed pitifully - it was only at this point I realised the horrific reality of the fact they thought he had meningitis. They did a lumbar puncture, meningitis was quickly confirmed and Reuben started his course of antibiotics. He was later confirmed as having pneumococcal meningitis, despite having had the Prevenar vaccination (we now understand that it does not cover all strains). 

His recovery at the time felt slow but in fact was very fast. I will never forget on the Friday, making myself some breakfast at the hospital and suddenly hearing him singing - I knew at this point he was going to be OK. He came home later that day but had to go back to have antibiotics through his canular for a further two weeks. He started walking again about six weeks later. 

This all took place in November 2007 but it wasn't until six months later that we realised his hearing had been affected. Due to his age we are still struggling to understand the exact extent of the hearing loss, but believe it has been lost completely on his right side and deteriorated on the left. Reuben also has some coordination difficulties and some potential behavioural problems that are likely to be as a result of the meningitis - these are being investigated. However, we know that we are extremely lucky and things could have been a whole lot worse. 

MRF provided us with significant support during the early days and we benefited from using the befriending scheme. We are currently exploring ways by which we might support the organisation further.

Lousie Savage
June 2009

UPDATE - AUGUST 2014

Some time between the age of four and five the audiologists were able to tell us what we had thought. Reuben had suffered a complete hearing loss on his right side. His left side is generally at a good level but can fluctuate. 

The hearing loss has a big impact on Reuben. He has to work harder in the classroom especially when there is background noise, this means that he is incredibly tired at the end of the school day. 

It of course impacts on his ability to focus and we believe this has been at the heart of many of his behavioural problems although he has also been diagnosed as being on the autistic spectrum. 

Reuben’s gross motor skills have also been impacted by the meningitis and we tend to find that he is about 6 - 12 months behind his peers in this regard. 

Contracting and surviving meningitis at two years old means that it is sometimes difficult to know what aspects are related and what is just part of his genetic make-up but we are doing everything that we can to ensure the long term impact of this dreadful disease is minimised.