It’s 17 years since the worst day of Liz Rose’s life. The day she knew she would lose her baby.

A womb infection terminated her pregnancy at 23½ weeks, expelling a 650g echo of a child from its protective cocoon. Liz had no concept that a foetus so underdone could even have a chance at life. 

But when the tiny girl emerged alive, doctors gave her a 50/50 chance of survival.

They said she’d almost definitely have the movement disorder cerebral palsy and severe learning difficulties. They said she’d be lucky to grow to 5ft (152cm). Maybe they hadn’t noticed the baby’s outsize feet.

Beside Liz’s Converse sneakers at the foot of the couch today are a second pair. At size 9½-10, they’re longer than that barely-baby’s 23cm span from head to heel.

They’re attached to a 5ft 7in teen with long bouncing curls and a cheeky laugh, who races her sister on dirt bikes, plays drums and loves drama. 

“It’s kind of crazy to think I was born that early, and I haven’t got, really, one of those issues that I could have got,” Charlotte Dickson says in her soft, breathy voice. 

When she emerged into this world on the precipice of survivability, Charlotte couldn’t breathe or feed herself. Her skin was as fragile as rice paper. 

Had she been born a decade, maybe even five years, earlier, this miracle of modern medicine would not be here.

Charlotte’s first weeks took her to hell and back, with an infection, brain bleed and surgery. While her dad, John, got stuck in, changing nappies, Liz resisted attachment, fearing Charlotte was not here to stay. Then at about two weeks, Liz held her baby against her chest for the first of 200 kangaroo cuddles. She reckons the doctors only let her hold Charlotte because they thought she wasn’t going to make it. But after that touch of skin on skin there was no going back.

It’s not clear when baby incubators arrived in New Zealand, although a Northern Advocate report in March 1941 announces “Baby’s Life Saved by Incubator”. A dying 2lb14oz (1.3kg) baby born at Auckland Hospital was fed and tended in a “shock cradle” or incubator and had grown to 4½ lbs.

But the first proper neonatal intensive care unit (NICU) was not established here until the early 1970s, in Dunedin.

By then, neonatology was emerging as a new profession, and Kiwis were already at the forefront of one of its earliest revolutions. 

In the 1950s, obstetrician Graham Liggins, known as Mont, decided to investigate what prompted labour, in the hope of finding a way to prevent babies popping out early. Initially experimenting on sheep, he discovered that the foetus’s production of the hormone cortisol can trigger labour.

But the unexpected survival of a too-early lamb suggested it also did something else – helped rapidly mature lungs that should be too undeveloped to inflate.

In a clinical trial run with Auckland paediatrician Ross Howie, Liggins investigated whether giving women corticosteroids in premature labour could prevent the respiratory distress syndrome that killed many premature babies. Their 1972 research paper showed the treatment reduced the baby death rate almost five-fold.

Howie also led the charge to establish a national neonatal intensive care network, in about 1982. The five main hospitals with prem baby units – Auckland, Waikato, Wellington, Christchurch, and Dunedin – set up transport systems, so early babies could be saved wherever they were born.

But the prognosis for very premature babies remained grim. Vaughan Richardson started as a junior doctor at Wellington Hospital in the 1970s, and became a neonatal consultant in 1986. In those days, baby incubators were “just incapable” of looking after the tiniest babies.

“I try not to think of myself as a guy with a disability,” Mac says, sporting a trendy mullet, Huffer tee and the shadow of a moustache.

On weekdays, the 19-year-old catches the bus to uni to a supported living course. On Mondays, he goes to a gym specialising in people with disabilities. He hops on the rowing machine, drags a tyre on a rubber band, does body slams and burpies.

He likes to jog at the park and catch up with friends. He watches the NBA, rooting for the Lakers or Brooklyn Nets.

He’s a big tennis guy, he says with a broad grin. 

Mac has cerebral palsy – a movement disorder caused by irregular brain development that is one of the risks of very premature birth. As he grew, his muscles tightened and he became knock-kneed, needing intermittent treatments with relaxant Botox. His legs were then set in plaster for a week to help them stretch.

He’s come so very, very far from the kid who at three still couldn’t talk. From the undercooked baby in so much pain his father thought it might be kinder to end it all.

“I had a lot of obstacles to get past,” he says matter-of-factly. “Like I had Botox for all my life. I had surgeries. I also had braces on for a couple of years. So I got a lot of obstacles that I overcome to get to where I am.”

But he’s happy with his life. When he started at uni last year, he was nervous, because he didn’t know if he would make any friends. But he did. He’s learning skills. Learning about the world. Like how you write a CV. 

He doesn’t know where he’ll be in 10 years. He’s just enjoying the now. And trying not to think about what might have been had he been able to develop fully in the safe cave of his mother’s belly.

“Sometimes I think about what would have happened if I wasn’t born with a disability. Where I would go. Whether I’d be in a different uni. But I just try not to think. I just try to be just a normal guy.”

Parents of premature babies often talk about grief and guilt. Liz says it too – the constant wondering what would have been. 

Like Mac, David tries not to venture down that road. And he wouldn’t change his decisions – apart from not using the fertility pills that resulted in triplets in the first place.

“If you spend any time contemplating what could have been – and you do do it – you look at all of his character that’s deep within and you know what that could have meant to an able-bodied person. But if you go down that track, it’s fruitless and not good for him or anyone else.

“For me, I look at the wonderful young man, and the progress the guy makes. We’re in a blended family now and the able-bodied kids don’t do what he does, even around independence. He fiercely wants to do things himself.

“How he makes a peanut butter sandwich. It’s pretty easy to get a whole lot of bloody peanut butter and put it between two bits of white bread and stick it in a lunchbox. And that’s what he does. Whereas I’m sitting there thinking you want to put butter and you want to cut it nicely and wrap it. He’s never going to be able to do that. But he gets up every day and does that. The other kids don’t.

“All kids – they take their smarts for granted. He’s using his full potential to the max. So that’s how I look at him.

Down in Wellington, Mac’s sister India is also at uni, majoring in marketing. It’s pretty easy, she says.

Born at 640g, India came out smaller than Mac. She grew late but now she’s taller, at 168cm.

Nothing in her appearance betrays her untimely entry into the world. But the gravel in her voice is a constant reminder.

It’s quiet, husky – as if she’s recovering from a cold. Every single day someone asks about it. Probably three times a day. Are you sick? Talk louder. It’s annoying, she says. She works in retail and customers can be mean about it. But if that’s the price for being alive...

It’s probably damage from all the tubes, she says. She got it checked out in year 6 – the only time she remembers going to hospital, although Mac was in and out all the time. 

She remembers having learning support in years 7 and 8. Even now she says she’s not that smart, but she works hard to get good grades. 

She was always sporty, playing netball and lacrosse at school, doing gymnastics. And she never felt different.

“It’s crazy that I did make it. It was pretty early. Sometimes I think about what it would be like if we weren’t pre-term, if we were born at the right time. I reckon it would be a lot different. In terms of my parents, my brother. I’d probably still have a sister. But for people having premature babies, I don’t know, I think, me and Mac are pretty good now.

“I more think of it as a big deal for my mum and dad. It was really traumatising for them. And obviously they broke up because of it. I mean, it’s not my fault, but...”

David doesn’t blame the trauma of those early years for the breakup of his marriage. But it certainly takes a toll. He remembers a paediatrician describing it as a minefield. In the beginning, the mines are very close together; as you move forward, they become further apart.

“Some people come out faster than others...I would never say that my marriage fell apart because of it, even though you'll read statistics that will say that…But you wouldn’t wish it on anybody, on any relationship. It’s just so hard.”

Bigger babies don’t always mean fewer problems.

Born at 25 weeks and four days, and weighing in at 825g, Cullen Tidy arrived on the margin of extreme prematurity. His twin sister Brooke was smaller, at 680g.

Both ran into trouble – Brooke had a perforated stomach lining and Cullen a perforated bowel. Both needed surgery.

For their own sanity, their parents Clare and Ray treated the first months like a 9-5 job, deciding not to venture into the intensive care unit at night. “You can only sit and look at an incubator for so many hours in one day,” Clare says.

By the time Brooke came home, she was good to go. She’s never been sick since. But Cullen spent nine months in intensive care, three years on oxygen and barely grew. His first five years were a struggle for life, Clare says.

“Shame,” Brooke chimes in, laughing.

Cullen – now 18 – isn’t having a bar of the ribbing: “People give me shit for it, but I’m like, whatever, at least I came out properly, at least I didn’t die. I’m still happy.”

Even at 11, Cullen was still shorter than his sister Jamie, who is three years younger.

But a smudge of moustache signals he has well outgrown those childhood problems. He’s also again outgrown Brooke, who at about 152cm was the shortest in her class.

There’s nothing wrong with her development, though. Brooke made her school’s football first XI at 13, and used to play first XI hockey. Now she’s off on a scholarship to Otago University to study sports management and development. 

And her wit is sharp as. Where does she see herself in five years? “In debt,” she laughs.

Her only real reminder of her premature birth is her husky voice – her voicebox was nicked in an early operation.

Cullen had a tougher time at school. He has dyslexia and dysgraphia, which can make reading and writing hard. But he had a reader/writer for exams.

He’s been doing a mechanics course part time and hopes to get a panelbeating apprenticeship.

With four kids, Clare says they’re too busy to think much about the twins’ horror first 18 months. But they haven’t forgotten what it took to get them this far. At 16, the twins went for their last visit with Richardson.

“He told them they had to do something with their lives,” Clare remembers. “Because they cost $1 million, so don’t waste what we are giving you.”

Does Brooke ever think about her early start? “No”.

That ‘no’ is Berry’s dream for every tiny human coming into her care – that very premature babies should have the same life prospects as everyone else. It’s those first-day-at-school photos, all scabby knees and for-the-grandparents-grin, that keep her going when an emergency means she misses yet another family event. 

“That’s what my entire career is predicated on. That is the Utopian dream – that you are not going to have this inequitable outcome, based on your gestational age at birth.”

The key is to better replicate the amazing complexity of the womb, to let the baby’s brain develop more like a foetus’s. The rise and fall of blood sugars as mum eats and sleeps, the varied diet, the protection from infections and inflammation. 

“All the drugs we need to keep preterm babies safe – antibiotics, meds for heart, meds for lungs – the foetus mostly won’t have that. So while it’s absolutely essential to keeping preterm babies alive, it changes the microbiome, which is really important for setting you on a trajectory of wellness later on.”

There’s also plenty of room for improvement in preventing premature births. 

Māori, Pacific and low socioeconomic women have more than their share of premature babies. They have higher smoking rates and worse access to healthcare.

“We need good quality maternal healthcare, not just during diabetes, not just during pregnancy,” Berry says. “If our women are getting good quality healthcare before they’re even pregnant, then they’re going to have healthy pregnancies...If you’ve got a healthy pregnancy you’re more likely to get to term.

“Something as simple as a urinary tract infection. If you have a lead maternity carer and access, easy. You get tested, get antibiotics. If not, and it goes untreated, it can affect the pregnancy.

While concerns remain about the long-term consequences of extreme prematurity, Darlow’s research provides hope. While those 1986 babies were generally born later and bigger than today’s most premature babies, advances in neonatal intensive care and other technology mean the two groups might be more similar than they seem.

When he followed them up at age 28, some had significant disabilities, including cerebral palsy, blindness, quadriplegia and seizures. But most were doing extremely well. They might have slightly higher blood pressure, or slightly lower IQ.

“If you look at everything, it’s slightly on the wrong side of the ledger, but still within normal range.” 

While fewer were in relationships at 22-23, that difference disappeared by age 28. And even those with severe disabilities still had good self esteem.

“They really are functioning adults that are doing very well and contributing to society just like their peers. To me, that’s the thing that comes across so clearly. That’s why it’s such a joy to see them.”

Of the seven children Stuff has followed for the past 16 years, only one bears no mark of his shock entry into the world. 

When Cameron Lee celebrated his 21st birthday last year, his early arrival didn’t rate a mention. He can’t even remember how premature he was.

Born at 24½ weeks, Cameron almost died the first night and was deathly ill for two months. He spent his first nine months hooked up to an oxygen tank.

But the only reminder of those rugged months is Cameron’s inability to breathe quietly through his nose – a legacy of the oxygen prongs. 

He’s doing a construction apprenticeship, learning demolition, office fitouts and how to build decks, including helping with his parents’ one. He’s still at home, but plans to move out with his girlfriend this year. 

Is it weird to think he might not have made it?

“A little bit, but I’m alive, so…”

What stands out in the 16 years we’ve followed these families, is the extraordinary commitment of the parents to giving their children the best possible start. And the emotional cost that months and years of uncertainty and worry has wrought.

Saul Gallagher also turned 21 last year. While he was born in June, he celebrates his birthday in October, when he finally left hospital. That’s because the date he arrived so unexpectedly into the world is still a painful one for his mother, Yvonne.

“I can still come out in a rash of trauma around June. It’s ridiculous,” Yvonne says.

While she was so grateful to take home a living baby, when others did not, she sometimes falls into the ‘what if’ trap.

“They are such great kids, but have we given them a life harder than it needed to be? They are all left with a package of some sort. Physically. Often function wise. Left with something – challenged – that might not have been if they had just been able to cook properly.”

Born at 23½ weeks, Saul had dyspraxia, which he calls “a bit of a hard hitter when it came to being a kid”. He couldn’t snake and swerve to play tag. At 15, he still couldn’t tie his shoelace.

But he had a great childhood, and he’s accepted that being premature is just part of his makeup.

“If something new happens and I’m like ‘Why can’t I x or why can’t I y’, I can be like, that might have something to do with the prematurity, or it might just be me being a clown.”

It certainly hasn’t held him back. He’s studying politics and psychology at Auckland University and reckons he might go into policy advising. He reads books about ancient myths, murder mysteries, and science fiction, and plays strategic video games.

He’s endlessly grateful for the support of his mother and the doctors and nurses who saved his life.

“People who say they don’t trust medical professionals because they’ve done three Google searches and covered themselves in essential oils is kind of garbage reasoning.”

What would he say to parents faced with the impossible decision of whether to resuscitate a very premature baby?

“I very much enjoy being alive, so that’s kind of off the table, to just say ‘Get rid of it’. But as for raising the kid, try not to treat them differently, but at the same time, do educate them as to why they could be different.”

India says parents should realise the first 10 years will be hard, but not give up.

“Just because they’re premature doesn’t mean you should not have them.”

And even if they do end up with significant disabilities, that’s OK, Mac says.

“It’s fine with people who have a learning disorder, or a disability. You’re normal, you’re loved. I would not think, ‘I’ve got disabled kids’. You live your life, you’ve got mates who care about you.”

Back at Charlotte’s place, Liz acknowledges the constant grieving process – the wondering what might’ve, could’ve been. If Charlotte gets hurt, all those awful memories come rushing back. But sitting staring at that incubator almost 17 years ago, her most optimistic expectations would have fallen short of the big-foot teen beside her on the couch.

“I think we’re just incredibly lucky to have such a normal, happy human who we’re very proud of.”