Toddler making up for lost time
The living room of Laurel Gray’s home, in the quiet Christchurch suburb of Parklands, looks much like the living room of any family with a toddler.
There’s a sea of plastic building blocks in pink, purple and blue. A coffee table littered with alphabet fridge magnets and lunchbox-sized bags of potato chips. Scattered sippy cups and tubs of stuffed animals.
But a few things appear out of place.
A wooden crib, surrounded by grab-bags of medical equipment. An IV pole with a water bag hanging from it. The frantic beeping of an unplugged ventilator, signalling a spring to action.
Gray’s daughter, Maddison ‘Maddi’ Milne, has spent 12 of her 19 months in hospital, mostly at Starship children’s hospital in Auckland.
Maddi was born with severe distal tracheomalacia – weak and floppy airways that collapse when she tries to breathe.
Now she lives life plugged in, a tube running from an opening in her neck to a ventilator that pushes air into her lungs. ‘‘Maddi is quite special,’’ Gray says.
The toddler, all cheeky grins and tottering steps, is one of just 15 New Zealand children living with a tracheostomy tube and constant ventilator support, and the only one in Canterbury.
But plucky Maddi takes it all in her stride.
‘‘Her big personality has got her through this. We’ve almost lost her three or four times, so we’re very lucky to still have her.’’
Her parents first became aware of her condition when she was 3 months old.
‘‘I’d just put her down for a nap, when I heard this awful scream,’’ Gray says. ‘‘She turned all white and floppy, and we realised she wasn’t breathing.’’
In the ambulance, Maddi stopped breathing several times. She was stabilised once she reached Christchurch Hospital, but ‘‘everything stopped’’ when they tried to insert a feeding tube the next day – ‘‘Her breathing, her heart, everything’’.
Maddi was rushed to the operating theatre, then to the intensive care unit, and then to Starship.
‘‘We found out all the plumbing for her heart was on the wrong side, and there was a vascular ring wrapped around her airways.’’
Maddi had surgery to remove it, but her family were told nothing else could be done if her airways didn’t recover. ‘‘Luckily, they bounced back about 50 per cent. It wasn’t enough to breathe on her own, so she was put on a ventilator.’’ She was almost ready to be moved to a ward, when she took a turn for the worse.
Maddi had contracted meningitis, and fluid was building up in her brain. ‘‘She was put into an induced coma for three-and-a-half weeks, and ended up getting a shunt.’’
She went back to Starship in February as she still couldn’t breathe on her own, and had the tracheostomy inserted.
‘‘It was really hard through lockdown. She had two major surgeries, and her dad [Dan] was stuck in Christchurch and couldn’t be with us for six weeks.’’
But exactly a year after she was first rushed to hospital, Maddi was able to go home.
It has meant a big lifestyle change for the family though – two people need to be with her during the day and a carer has to stay up at night in case her tube comes out or gets blocked.
Starship went above and beyond for her family, Gray says, even sending staff to Christchurch Hospital to teach local medical workers about Maddi’s equipment.
‘‘Without Starship we wouldn’t have her.’’
Maddi’s prognosis for the future looks good.
She can now breathe on her own for 30 minutes each day, using a tracheostomy tube plug-in called a Swedish nose.
Gray hopes Maddi’s airways will be strong enough to breathe on her own by the time she reaches school age.
She’s confident her daughter can do it. ‘‘She’s a little fighter.’’
‘‘Her big personality has got her through this. We’ve almost lost her three or four times, so we’re very lucky to still have her.’’
Laurel Gray