Thomas's story

6th November 2014

A Brighton couple, who in April 2013 watched marathon runners on the sea front from hospital whilst their son fought back from meningitis, will compete in the same race in 2014

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Marathon effort

Andy, Emily and Thomas Squire’s dramatic story started on 12 April 2013 with a call from Thomas’s nursery, saying he’d woken from a nap quite distressed and running a temperature of 40. His parents rushed there and took him straight to the doctors.

They examined him and advised that there wasn't anything obviously wrong. Thomas was very sleepy though for the rest of the day and looking back that was not normal, Andy said.

“As he is our first baby we trusted advice and thought nothing more. We had reassurance from our doctor, his temperature had come down slightly and, as the doctor had predicted, Thomas was sick during the night. His temperature stayed down but he didn't eat or drink anything for most of the following night. We were concerned about dehydration so went to the chemist to get some rehydration salts".

Sent to hospital

"Thomas stayed very lethargic. The chemist advised we see a doctor again so we rushed him to the out of hours at the hospital. They took one look at how floppy he was, the fact he couldn't keep any fluid down and sent us straight to A&E. We were seen straightaway and within half an hour he was being pumped full of antibiotics, wired up on a drip and blood was being taken. We can’t thank the doctors enough for making that decision, as this is ultimately what saved his life. At this stage no one could determine meningitis. We kept looking for a rash to appear but it never did. It wasn't until the Sunday – the day of the 2013 Marathon – that we were told that it was meningitis and he was to have a lumbar puncture to confirm".

Waiting game

“Thomas’s infection levels were the highest they had ever seen at the Royal Alex and we were told it was a sit and wait game. Thomas was barely conscious for the first five days in hospital but luckily didn't need a life support machine. By the middle of the following week he had become more conscious, even managing a little smile and we knew at this point he was going to get better. It was a very slow process from there. His infection levels were dropping but far too slowly. He had numerous CT scans to check the fluid on his brain. Serious concerns were suddenly raised as these fluids appeared to be increasing. This led to talk of having him transferred to Kings College London for an operation to drain the fluid. Suddenly Thomas turned a corner, improving rapidly over the following days. The decision was made to wait and see if the fluid would drain away naturally. He spent a total of three weeks in hospital and a total of six weeks on antibiotics".

After-effects

“Whilst we were in hospital we raised concerns that Thomas may have lost some hearing. We were advised that we would have to wait six weeks for a hearing test, allowing him time to fully recover from his ordeal. We had hoped he would still retain some hearing but unfortunately we found out he was left profoundly deaf. Due to his age and fear of ossification, he was fast tracked for cochlear implants. The operation was carried out within a month. Unfortunately this process bought further anguish. The first operation was aborted after two hours and he was bought back round from the general anaesthetic due to his irregular oxygen levels. We waited two weeks for the next six hour operation, which was initially successful. X-rays were checked two weeks later at the post op review only to find out one of the implants had slipped out of place. We then had to go back in for a final four hour operation two weeks later to reposition the implant".

Bouncing back

“Thomas miraculously pulled through and has flourished into a healthy and happy boy. Whilst his loss of hearing is devastating news we were blessed to be amongst the lucky ones who make it through this dreadful disease. Meningitis Now was a great comfort to us throughout a difficult year and also awarded us funding under their financial grants scheme to do our BSL Level 1 course, allowing us to learn sign language alongside Thomas. The charity’s website was a brilliant source of information for us. We still refer to it now to research the after effects and the possibility of further implications of the illness. We are so grateful for this and really wanted to give something back. All in all 2013 was a pretty hard year for us with plenty of time spent in hospitals. Thomas is now thriving though – his hearing is up to the best it will be with the cochlear implants. He is responding to sound and even starting to say some words. 2014 is going to be a much better year for us all.”

What’s life like with Thomas now?

Two years on, life with Thomas is absolutely amazing! He has taken well to his cochlear implants and they are a roaring success. He’s making huge progress with his speech and exceeding all expectations. Hearing his little voice as he babbles away is just the most precious thing.