Noah's Story
"When you spend months living beside a hospital cot, your world becomes very small."
When Noah was born in February, he was diagnosed with a rare condition affecting the connection between his oesophagus and windpipe.
His parents Cuan and Malcolm thought they were finally reaching the end of a difficult pregnancy. Instead he underwent major surgery at just two days old. In the weeks that followed, he experienced repeated choking episodes.
The family spent the first five months of Noah’s life in hospital. Their world became a blur of intensive care, emergency interventions, and anxious hours spent by his bedside.
Since then, Noah has spent all but two weeks of his life in hospital.
Cuan says, “The first time, he turned blue in my arms. A few weeks later, it happened again. He went completely blue and floppy. I had to give him CPR. In that moment, I genuinely thought I’d lost him.”
For Cuan, the emotional impact of these long months has been overwhelming.
“I’ve gone into what I call ‘freeze mode’. I miss being at home. I miss going for walks, exercising, reading a book – all the little things that made life feel normal.”
Yet amongst the fear and exhaustion, support from ECHC has helped make the journey more bearable.
The uncertainty is one of the hardest parts. You can never fully relax because you're always worrying what might happen next.
Cuan - Noah's Mum
The ECHC team have been amazing.
Sometimes it’s the simple things that make the biggest difference.
They regularly check in on us, making sure we’re okay and giving us space to talk when we need it.
It breaks up the day and reminds you you’re not facing this alone. When you’re living through something this stressful, having people there for you matters more than you can imagine.
Sensory play is a family favourite.
“It’s our favourite thing to do together as a family. Hospital can be such a stressful place, but for that little bit of time, we get to do something normal. He absolutely loves it and seeing him giggle and interact is so special.”
Today, Noah is still facing challenges, but he continues to amaze everyone around him.
“He’s such a happy little boy. He’s been through more in a few months than most people do in a lifetime, and somehow he still wakes up smiling. We’re just so proud of him.”
