Tomás
Back in August 2019 Sinead was immediately concerned when Tomás had gone through the night without wetting his nappy.
She rang her doctor and was advised to take him to the nearby Portiuncula Hospital in Ballinasloe. There he was diagnosed with Hand Foot and Mouth disease – a mild infection that’s fairly common in children of all ages.
However, while in hospital things took a turn for the worse: “I remember he had blisters on the inside of his mouth and was kept in on the Sunday and Monday night. But then on the Tuesday morning he suddenly had a really bad fit. It came out of nowhere. The doctors ordered some brain scans and he was diagnosed with something called Rhombencephalitis which is an inflammation of the brain stem. It’s incredibly serious.” Tomás was immediately transferred to CHI at Temple Street. “I got out of the ambulance and met his team at the door. They were preparing us for the worst. They told us the next 12 hours would be critical; that even if it was a good case and he came through it he could have severe disabilities.”
Tomás spent the next three and a half weeks in hospital. “I’ll never forget that first night in Temple Street, or the following weeks. Tomás had brain scans, x-rays, a lumbar puncture – the whole shebang. He wasn’t communicative in any way. It was a horrible, horrible experience – I wouldn’t wish it on anybody… But his medical team was incredible. We had 100% trust in them, from the minute we went in. They knew exactly what it was, how serious it was and were upfront with us from the start. That was my thing. I didn’t want to be blindsided; I wanted to know the truth.
Towards the end of his stay Tomás met with Alison Sweeney who runs the Music Therapy Department in CHI at Temple Street. “We knew that he liked music, but at that age you’re only singing nursery rhymes to him. The way Alison was with him was just unbelievable. She gave him a kind of a tambourine, and she started singing and playing to him – then stopping and starting again. She wanted to see if he’d be able to stop and start at the same time. My husband Derek and I were amazed. Tomás had a big smile on his face; he was sitting up and he hadn’t sat up much at all prior to that. He just started to come out of himself, was much more communicative. It was just amazing to see the change in him!”
Now, three years on Tomás has come full circle, “We have been discharged from Temple Street and Tomás is doing really well, considering we were told that he could be paralyzed or unable to speak. He starts Primary School in September and loves playing Basketball & GAA, speaking Irish and singing thanks to Realta Gael in Athlone and Naionra Chnoc Liamhna . Tomás is also now a brother to 5-month-old twin sisters, and he’s taken on the role of big brother amazingly! We may not attend Temple Street anymore, but we still do some of the music therapy exercise that we learnt whilst there and we’re now even teaching them to the twins! Alison told us what kind of music to play – it’s been really good, really beneficial for him.” As Sinead and Derek were unaware of what Encephalitis was they joined a monthly parents group where parents share advice and stories. “Encephalitis is so rare so it’s great to chat to other families and people who have experienced same and get advice. I know how much worse it could be, so we’re really lucky. All the treatment we got in Temple Street was second to none. Tomás is doing so well now, considering what the prognosis was. And that’s all down to Dr Declan O’Rourke, Dr Michaela Pentony, Alison in the Music Therapy Department, and the whole team who cared for him. There isn’t enough money in the world to thank them for Tomás – they completely and utterly saved his life.” Help give children like Tomas the very best chance and take part in our Christmas Raffle this year. Button: Read more about Tomas and register
