Like his friends, Tom has his favourite classroom and playground activities (the sandpit and ball games rate highly, as does reading) and he’s settled into school life wonderfully (remember, it’s a big jump from kinder to school). But Tom had a very different start to life compared to his classmates. His mum and dad, Jen and Andrew, have shared Tom’s story to help people understand more about him.
Tom’s story began when he was just 17 weeks in utero and Jen’s water broke. Jen spent the following 13 weeks in hospital flat on her back, defying all the odds and carrying Tom to a safe gestation. He was born in June 2008, at 29 weeks and weighing just 953gm. Tom suffered from Chronic Lung Disease (very common in premature babies), which meant his lungs weren’t strong enough to function without the help of additional oxygen. His first few months were spent in the Neonatal Intensive Care Unit at the Royal Women’s Hospital, and all was progressing well until Tom contracted pneumonia. He became critically ill and the odds were not in his favour. However, he was a determined bub and slowly but surely he improved. Christmas came and went – his first Santa photo was taken in the hospital. Finally, at 290 days (9 ½ months later) he was discharged, along with a bit of gear – fulltime additional oxygen and a naso-gastric feeding tube (NGT).
Life settled into a routine for baby Tom and he celebrated his first birthday, went on holidays and overcame a couple of colds (surprising his doctors). However, in November 2009, he succumbed to not one, but three chest viruses all at once. He was admitted to the Paediatric Intensive Care Unit at Royal Children’s Hospital and was put on a respirator, once again fighting for his life. Despite all they’d been through, this was the event that had Jen and Andrew the most terrified. The Herald Sun ran a story on the 15 sickest children in Victoria at the time, and Tom featured. Miraculously he pulled through (and happily hasn’t needed to be readmitted to RCH since then).
In 2010, Jen and Andrew decided to look for ways to get rid of Tom’s feeding tube – a very challenging task that involved much research and a trip to Austria to a specialist clinic (long haul flights with a two-year-old are tough at the best of times, let alone one with a child who is oxygen dependent). The effort paid off and soon Tom was able to do away his feeding tube, which also meant his need for additional oxygen decreased. He began having increasingly longer stretches of time without his additional oxygen and by Christmas 2011, Tom was officially discharged from Respiratory Medicine at The Royal Children’s Hospital at age 1257 days – he no longer needed additional oxygen.
Tom’s complicated medical history had a severe influence on his development, delaying his progress in all areas – he only learnt to sit unaided at the age of two, learnt to crawl at three and took his first unaided steps a few days before his fifth birthday.
Like other kids his age, Tom went to kinder. Not daunted by the steeply sloped playground at Studley Park Kindergarten, or the need to carry around his communication book to help with language, Tom quickly got into the swing of learning and playing alongside other children. The kinder experience had many positive benefits, from simple things such as Tom trying foods that his friends were eating (after the feeding tube, he had a severe oral aversion, making foods that weren’t mushy difficult to eat) to developing close friendships that have carried on to Kew Primary School.
Progress since Tom took his first steps has been swift – you’ll see him zooming around the playground on his Croc Walker and he does more than keep up with the other kids – he’s often leading the pack. In fact, earlier this year, Tom completed his third Melbourne Marathon (a claim that not many Preppies can make)!
If you see a blond-headed streak of blue whiz by you at pick-up time, you can be sure it’s Tom. Although some days, you’ll hear Jen calling out “Tom, where’s your Walker?!”, as he does away with his wheels and walks unassisted. It’s huge progress given that two and half years ago, Andrew carried Tom into kinder for his first session, not imagining that come 2014, he’d be playing tag with friends in the school playground.
Jen and Andrew are very open about Tom’s history – you can read a more detailed account of his story here.