Two-year-old Maddison Milne, pictured with her mother Laurel. Maddi has spent almost half her life in a paediatric intensive care unit. Photo / Tessa Burrows
As Christchurch toddler Maddison Milne explores her backyard with a bright smile on her face, you'd never guess that, until recently, her entire world was contained within four hospital walls. Incredibly, the cheerful 3-year-old has spent almost half her life in a paediatric intensive care unit, struggling to breathe on her own.
The brave wee girl's ordeal began in September 2019, when she was just 3 months old. Not long after her mum Laurel had put Maddi down for her usual morning nap, she heard her baby screaming – a sound unlike she'd ever heard before.
Running into her daughter's room, Laurel immediately knew something was very wrong and called 111. By the time paramedics arrived, they found a pale and limp Maddi struggling to breathe, with a puckered chest collapsed into her spine. Laurel recalls, "I had to keep calm for the other kids, but inside I was panicking, thinking, 'This is serious.'"
On the way to hospital, Maddi stopped breathing three times and had to have a hole drilled into her leg to get antibiotics into her bloodstream. Laurel recalls, "I felt hopeless as a mum because I couldn't fix her pain, but I knew she was in the best hands."
What followed was 21 months of hospital stays, medical-grade equipment filling the family home, and two parents who are now trained to a nurse level when it comes to ventilators and tracheostomies. But as Laurel says, "You do what you have to do for your kids."
Laurel, 41, and her sales rep husband Daniel Milne, 44 – also parents to Lucy, 25, Holly, 15, and Mark, 14 – were not entirely surprised that Maddi had some health concerns. Before she was born, scans showed abnormalities in her heart that constricted her airways.
However, nothing prepared them for seeing their young daughter stop breathing or, as Dan would soon witness, his tiny daughter being shocked back to life.
In Christchurch Hospital, the couple thought they were safe to leave Maddi for an hour to go home and shower. But doctors soon urgently called them back.
Arriving first, Dan recalls, "There were about 20 doctors and nurses in the room, one of whom was straddling her and shocking her little heart with paddles bigger than she was. There was a lot happening, but somehow it was like it was in slow motion."
Maddi was rushed into theatre and after an agonising wait, her parents were told that what had started as a common cold was now a life-threatening condition. Their little girl's body couldn't compete with her fluid-filled airways, which were now "as flat as a pancake".
Eventually, Maddi was diagnosed with tracheomalacia and bilateral bronchomalacia, a condition that affects only 15 Kiwi children and essentially means her airways are too soft and underdeveloped to stay open on their own. On top of this, the wee girl also had Wolff-Parkinson-White syndrome, which caused a heart rate so rapid that her obstructed breathing couldn't keep up.
It soon became clear Maddi needed the specialist team at Starship Children's Hospital in Auckland. So her siblings were woken up to say late-night goodbyes to their little sister, who was in a coma and on a ventilator, about to be airlifted to the other end of the country.
"I was absolutely terrified," tells Laurel, who joined her daughter, with Dan left behind to arrange childcare.
"We didn't know if she was going to survive. All I wanted was for this nightmare to end."
At Starship, doctors tried to take Maddi off her ventilator three times, warning Laurel her girl might not make it. "They were preparing us for the worst-case scenario and I burst out crying, calling Dan to say we were going to lose our daughter – but she proved us wrong," says Laurel.
Finally, Maddi was ready to leave the paediatric intensive care unit (PICU), but just as they were about to move her to the wards, she developed bacterial meningitis and a build-up of fluid on her brain, which required a spinal tap, something that could result in brain damage. "I had a horrible sinking feeling," recalls Laurel.
At this point, Dan was still in Christchurch, "feeling very isolated", so Starship got him on the next flight to Auckland, where both parents would stay for two months as Maddi underwent brain surgery.
"Most of that time, we were in PICU," explains Laurel. "I take my hat off to the amazing staff there. We were on one wage and we couldn't afford to bring Dan up every time she had surgery. A social worker organised everything for us."
The family returned to Christchurch in November 2019, with Maddi thankfully free from brain damage, but by Christmas, the wee girl was back on a ventilator at their local hospital after a growth spurt interfered with her airways.
And in February 2020, she and Lauren were flown once again to Starship, where they stayed until July, spending Maddi's first birthday and the country's first Covid-19 lockdown in the hospital.
"Maddi had two major surgeries, but because we were in lockdown, Dan couldn't come up," says Laurel. "I just wanted him there to hug me and say everything was going to be okay.
"But the team at Starship made her birthday so special. They organised cake, and we had visits from nurses and doctors all day. I didn't think we'd reach her first birthday, so to see her with cupcake icing all over her face brought tears to my eyes. I still can't believe we reached this milestone."
Maddi was finally well enough to be transferred to Christchurch Hospital in July and returned to her home last September, leaving hospital exactly 12 months to the terrifying day she stopped breathing.
She's still unable to breathe on her own for longer than 30 minutes and is hooked up to a portable ventilator at all times, but Laurel says, "We can't wrap her in cotton wool. We have other kids who are living normal lives."
Starship has since sent experts down to Christchurch to train nurses so Maddi can be cared for in her hometown. Meanwhile, the Canterbury District Health Board and disability support group Manawanui have organised for 105 hours of care a week so there's always someone awake with Maddi 24 hours a day and her parents can get some sleep.
A grateful Laurel shares, "They've all been so amazing. When I told the nurses that I couldn't hold my daughter's life in my hands and have the weight of the world on my shoulders, they gave me all the time I needed.
"I wouldn't have been able to get through any of this without their support. Starship, in particular, saved our daughter's life. She wouldn't be here without them."
The children's hospital has provided ongoing training to Laurel and Dan, who are also proficient in specialty CPR.
"For the first time in a long time, it feels like we can care for our daughter," says the devoted mum. "It feels like we've got our little girl back. We're so blessed to have this superhero with us."
Starship's Paediatric Intensive Care Unit currently has a shortage of beds. With just 22 spaces for the 1.25 million Kiwi children under 16, the PICU reaches critical capacity every 48 hours. Please visit starshipicu.org.nz or call 0800 STARSHIP to help fund the 10 extra beds that are urgently needed.