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Canberra Today 15°/16° | Thursday, March 28, 2024 | Digital Edition | Crossword & Sudoku

The miracle survival of tiny Tom

OUR family has spent so much time at Sydney Children’s Hospital in the past eight months that my five-year-old son Tom counts among his friends doctors, neurosurgeons, nurses, clown doctors, play therapists and several Captain Starlights. He even looks forward to going back to Randwick because he’s keen to see everyone again.

Tom’s endured hundreds of painful tests, two brain surgeries, months in hospital and is now on kidney dialysis, and despite his tiredness, he’s loving school and lives as normal a life as he can.

He was fine until September last year, when over breakfast he held up his right hand and said it had “gone funny”. His hand flopped down from the wrist and he couldn’t grip anything. Then his speech became slurred.

Our GP thought Tom had suffered a TIA, or mini-stroke, and sent us to emergency at Canberra Hospital, even though he’d recovered within 20 minutes or so, and it was like nothing had ever happened.

Later that night, camped out next to Tom in the pediatric ward, we read books and I told him that we might just have a couple of sleeps in the hospital while the doctors made sure he was okay after his funny hand.

But an ultrasound and blood tests the next day showed a problem with his kidneys. He was also found to have dangerously high blood pressure, and after a worryingly long MRI, a doctor told us that something in Tom’s brain was so very wrong that we’d be going straight to Sydney Children’s Hospital. It was 1am.

An issue with the weather meant that the chopper couldn’t make it, so a mobile-ICU road ambulance was sent for us and we spent the next couple of hours in intensive care waiting for it to arrive.

It didn’t seem like anything was wrong with Tom – he looked fine and was so happy, ignoring the cannula in his arm and the painful arterial line in his thigh monitoring his blood pressure. The nurses thought he may have been on a post-anaesthetic high, but that’s just him – he’s a funny little guy who doesn’t stop talking.

Tom enjoyed the ambulance ride to Sydney because he got to watch movies – he was amazingly accepting of it all. My husband Dan met us there, and our daughter Rosie, then two, stayed with family. It felt strange to be leaving Rosie in Canberra, but she was safe and we had to focus on our boy.

There wasn’t much information we could give friends, family or work at this stage – we just had to drop everything and do a midnight flit, and while it was obviously serious, it was also unclear what was wrong. One thing that stuck in my mind was that the doctor had said: “It’s not cancer.” Apparently, that’s the first thing that parents ask, so he wanted to rule it out up-front. But the not-cancer-news didn’t appear to be good news, and all we could think was, well, what is it, then?

At Sydney Children’s Hospital, Tom was monitored in intensive care for a few weeks and we were gently told he would need brain surgery because he has moyamoya disease, a rare condition where arteries in the brain are blocked, restricting blood flow. It was considered fairly miraculous that he’d made it until now without any issues, especially because his case is complicated – it also affects his kidneys, so he would suffer renal failure, too.

It’s been a long road, and will continue to be. We spent a few months in Sydney after that, in Ronald McDonald house, with Rosie joining us a week later. Thankfully, Tom recovered well from the operations. It’s fortunate that we witnessed the TIA, and that he was able to have surgery before any brain damage was done. However, our lives have been turned upside down; he requires a lot of care, bucketloads of medication, dialysis at home while he sleeps and frequent trips to Sydney.

Tom has taken everything in his stride though, and seems to cope with his situation by asking the doctors hundreds of insightful questions and facing every new challenge head on. He’s an inspiration to us.

[box]Help the hospital on 1800 644336

FROM 9am on the Queen’s Birthday holiday, Monday, June 11, WIN Television will broadcast the Channel Nine Gold Week telethon to raise funds for Sydney Children’s Hospital in Randwick. To donate on the day call 1800 644336

Every year the hospital touches the lives of more than 326,000 children across NSW and beyond. Last year, 383 acutely ill children from Canberra needed its highly specialised help.

The telethon will feature TV personalities, inspiring stories from hospital families and staff, a studio audience and performances by some of Australia’s top music acts. Last year, the telethon raised $1.68 million to help the hospital buy life-saving equipment, refurbish wards and fund essential research.

More information at www.goldweek.org.au [/box]

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Kathryn Vukovljak

Kathryn Vukovljak

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