Born under a fighting sign

BY TOM FITZSIMONS

If Eva Kenyon had been born in most places around the country, she probably wouldn't be here.

On January 8, 2008, when she was delivered at Wellington Hospital, she was barely the length of a pen, her skin was the raw red colour common to very premature babies, and she weighed 475 grams – slightly more than a pound of butter.

Her mother, Kyla, had been pregnant for just 23 weeks and five days. She spent the last 11 days nearly upside down, trying to keep her baby inside her for as long as she could after her waters broke.

Even then, Eva was born right on the boundary of what neonatal specialists consider it possible to save.

Some hospitals will not try to help babies born before 25 weeks' gestation.

Long-serving nurses at Wellington remember a time when the number was 28 weeks, and before that 30 weeks.

When Eva was born, her oxygen levels were good (premature babies have tiny, undeveloped lungs), but the mountain ahead seemed massive. "Nobody thought she was going to make it out the door," Mrs Kenyon recalls.

"If she was born in Auckland, we wouldn't have her. She wouldn't be here today."

Kyla and her husband, Mark, of Palmerston North, had already been through two miscarriages, four years of infertility, several surgeries and three failed rounds of fertility treatment.

Now they faced an equally daunting journey. Nobody could tell them what would happen, how long they might have to wait, how many times they would have to watch their little girl get trundled off for urgent surgery.

"You just want someone to say it's OK," Mrs Kenyon says. But they can't – nobody knows, and nobody wants to raise false hope.

I first came across Eva's story when my own son was in Wellington's neonatal intensive care unit at the end of last year.

It was among a handful of similar incredible stories sent in by families and displayed in a hallway, next to rooms where parents stay over when their babies are finally about to go home.

They were something to read, a distraction during deeply anxious times, but they were also a sign of something else: that other people had been here before, had made it through the unimaginable and taken their baby home.

Wellington's neonatal unit is on the fourth floor of the region's new hospital building in Newtown.

Stepping out of the main elevator, it's about 10 paces to the right through a foyer and then 30 paces right again down a corridor. I know that walk well.

Unlike at the old hospital, the unit sits opposite the delivery suites, so babies in trouble can immediately be wheeled across the hallway. They go in incubators that look like miniature spaceships, with everything from oxygen tanks to heart monitors on board.

As they're crossing, surrounded by nurses and doctors in navy blue scrubs, there's often a new father in tow, pale but wired after the labour, cast suddenly into two disorienting roles: protector of a fragile human cargo, but helpless bystander too.

Aside from that initial emergency entry, visitors usually have to push a buzzer, make it through a locked door, shed their coats and wash their hands before getting into the unit.

Parents are allowed in around the clock.

For everyone else, visiting hours are tightly controlled. Children under 12 aren't allowed in unless their sibling is in the unit. All of this is done to keep germs out.

Inside, the temperature is kept permanently balmy. The babies are arranged in a series of rooms that run clockwise around the border of the unit, generally moving from smaller infants to bigger ones.

The final room is for "feeders and growers" – those closest to checking out and heading home.

About 800 babies have been admitted to the unit in the past year. Two-thirds were premature – the rest were full-term, sometimes needing surgery.

Some are in for months, others for only a day or two. Some hang on the brink, others sail through with scarcely a problem. Most are born in Wellington but others come from as far as Hawke's Bay, Manawatu, Wairarapa, Nelson and Blenheim.

The unit is funded for 34 babies but has acommodated up to 50 at times this year when space has been tight around the country, clinical nurse specialist Marilyn Gibson says.

"It's very full, very cramped," she says of those times. "We just squash up. There's always room for one more. You don't have a choice."

Because of the need to maintain the warm temperature, there is only one window in the unit that opens. It's a southward-facing stained-glass picture of Wellington.

Hospital staff say it's designed to release the spirits of the babies that did not make it.

Hardly any of that is apparent when parents first arrive with their babies. If they've been expecting complications, they might have had a tour of the unit before the birth. If not, it will all be frighteningly new.

Either way, the parents will be exhausted.

They will just have finished one of the more draining and painful and jubilant experiences around.

Now they will be faced with machines ticking and whirring, a monitor with neon numbers they don't understand, nurses and doctors hurrying around, and in the middle of all that, their baby.

"Especially on the first day, they're terrified," says Alesia Smith, 23, a nurse on staff. "[We] talk them through everything and tell them: eventually it will be a lot different. But it's so overwhelming for them."

Kyra Poinga, 15, mother of six-week-old Arleigha, slept after her delivery and arrived in the unit to find her daughter already back from surgery.

"You feel like nobody else can know what you're feeling but you – and maybe the nurses."

Tracey Honeysett is just grateful she and husband Matt, both 29, got a look around before their twins, Eli and Isaac, were born.

"Otherwise the cords, and the monitor, and the size of the babies would have been a shock," she says.

This settles eventually. Parents learn what all the neon numbers mean (usually heart rate, blood pressure and oxygen saturation level). They learn their nurses' names and what to do with the milk that mum is suddenly producing. They sign forms and choose a name for their baby.

At some point, they get their first hold – a universal high point for parents who sometimes haven't been able to touch their baby for days or even weeks.

Debs Kidson, 24, had a "skin-to-skin kangaroo cuddle" with her triplets at three days' old.

"I was able to hold them for an hour. It was so amazing. I hadn't expected to be able to do it so soon."

Then comes routine. The unit becomes a second home for parents, they take over some of the caring for their baby, they even get bored.

"The outside world is pretty much non-existent," says Ms Kidson.

Eva Kenyon did not give her parents a chance to get bored. She was on a rollercoaster ride from the start. Because her lungs were working surprisingly well, doctors took her off a ventilator when she was 15 hours old.

"Oh, how things changed," her parents write, in the story on the neonatal unit wall. At nine days old, the tube went down Eva's throat again and she was back on the ventilator.

Over the next four months, Eva had seven infections, 11 blood transfusions, "copious amounts of antibiotics", CPR, fractured ribs from the CPR, heart surgery, collapsed lungs, morphine withdrawals and chronic lung disease, among other problems.

There were moments of pure joy for her parents – feeling Eva cling on to their fingers, seeing her open her eyes for the first time and getting to hold her when she was a month old.

But at one point, as she lay in her incubator waiting for surgery, they had to kiss her goodbye, unsure if she would come back alive.

"We almost lost Eva so many times," they write. "She was either doing really well, or really bad – there didn't seem to be much in between."

Along with anxiety, another universal in the neonatal unit is the wave of gratitude parents feel toward staff.

"They've pretty much got God status for us. They saved our girl," says Mrs Kenyon, for one.

All White Ben Sigmund, whose baby Cameron was born 16 weeks' premature earlier this year, has said he's been "blown away" by the care at the unit.

So what's it like to work there, caring for both parents and patients?

"It's such an intense environment," says nurse Alesia Smith, who decided she wanted to be a neonatal nurse the first time she saw a unit. "You can feel it as soon as you walk through the doors.

"At the same time, it's really caring and the parents are so appreciative. You get many, many chocolates."

Hasu Patel practically demanded a job when she was working in the unit as a nursing student. She'd left her husband in charge of the family business, Newtown restaurant Planet Spice, while she went into nursing.

"Being in business, I knew you've got to speak up and say what you want."

It worked and she was hired, to her enduring delight.

"I love working with the babies and the parents. It's the whole beginning of life – they're so fragile. A lot of people are scared by small premature babies, but I'm not."

Some babies need one-on-one care around the clock. That takes staff – the unit has 110 nurses, equivalent to 58 fulltime positions.

They work in 12-hour shifts starting at either 7.30am to 7.30pm. Their duties include everything from overseeing the babies' drugs, to monitoring their vital signs, to teaching parents how to look after them.

Most of the nurses are young women. That has one clear side-effect: "You get very clucky when you're here," says Ms Smith. "We have quite high pregnancy rates, you could say."

Do they get attached to their young charges after watching over them for so long?

"You do," says nurse Philippa Hayne, 34. "But you have to remember you're not the parent. You're just looking after them. But it's hard when the ones who are here for a long time go home."

It's harder still when one of the babies dies. It doesn't happen often but it can be hugely difficult, says Ms Patel. "Sometimes it's the parents who really, really deserve a baby and they have one and then it dies and you're just like: that sucks."

How does she cope?

"Go home and have a good cry. You have to have a good cry and let it all out. You have to face the facts that probably it wasn't meant to be."

Staff are good at talking over such experiences, while bigger debriefing sessions are sometimes held after difficult cases. Another coping mechanism, the nurses agree, is the distinctive sense of humour they've developed.

But tragedy is not the norm. "Every time I say I work in neonates," says Ms Smith, "people say, `That must be so sad'. I say, `No, it's not at all'. It's not a sad place to work."

The final hurdle in the neonatal unit is the one that gets parents out the door. It can take a while. When a baby doesn't put on weight fast enough, or struggles to transition to breastfeeding after being tube-fed, or takes a backward step for no clear reason, their stay is prolonged.

Parents can stay over in the unit for a few days before their baby gets out, by which time outside pressures are encroaching. Dad has usually gone back to work. If they have other children, they will be juggling caring for them with their new baby.

Understandably, most want to be gone, says Tisha Russell, who helps run the neonatal community team, which oversees babies' transition out of the unit.

But heading home doesn't mean parents are in the clear. Some babies have to stay on oxygen and others need daily monitoring. Others from the unit have been among the spate of bed-sharing deaths over the past few years – which is forcing the community nurses to spend more and more time warning about the issue.

But despite the challenges, Ms Russell says, the best part of the job is seeing parents at home again.

"You see them in here worn-out, exhausted, overwhelmed, frustrated, tearful, because of the whole stress of the situation ...

"And then you see them come through that and you see them get home, and you see their shoulders go back, their heads go up, their eyes brighten. They're independent, they're in control, and they're being a parent – which is something they can't be totally in here."

Eva Kenyon is now 2 1/2 years old. When I call her mum Kyla, at home in Palmerston North, Eva is outside throwing pegs around the back yard.

Even after the drama of hospital, her life has been full of challenges.

She came home after six months, but remained on constant oxygen until she was a year old. From then until 20 months, she only used it at night.

Until she turned two, her parents kept her home most of the time because of the risk of infection. She still has chronic lung disease but should grow out of that by the time she is seven. Now she is stronger, she goes to music lessons and playgroup, where she mixes with other kids and builds up her immunity.

Her parents have faced uncertainty about how she will develop – the medical world is still finding out the effects of being born so premature.

So far, her results have been enormously encouraging. While her motor skills are significantly delayed, her cognitive skills are only about four months behind her peers, and her social and behavioural skills are normal.

Eva is a character, her mum says.

"She's feisty. She's delightful. She never complains. She'll be sick and we don't even know it."

Despite the exhaustion and worry that come with such a tortuous journey – through the neonatal unit and back home – her parents focus on one thought. "Every day we look at her and think, `We're so, so lucky'."

'Each stage had it's own torture'

My son was born last November 20. The doctors and nurses were waiting in the corner of the delivery room, all in navy blue.

The transport incubator was primed. Everything was happening in a blur.

Nearly five months earlier, during a routine scan, a radiologist had spotted a tiny grey mark on his tiny lung. We keep meaning to find this woman and thank her.

More scans established he had a diaphragmatic hernia, a one-in-5000 condition that's hard to explain, but basically allows parts of organs like the stomach or bowel to slip up into the chest.

This cramps the lungs, leaving them dangerously small.

Something like half of babies diagnosed with the condition don't survive, although there are indicators which improve those chances. No one can tell for sure until birth.

Suffice it to say: we were extremely scared.

When my son came out, grey and still, we got ready to panic, but the doctors didn't. They put a tube down his throat, and soon he had pink cheeks. His mother held him, he blinked a few times, then he was put into an incubator. I followed him across the hallway.

The neonatal unit was everything the other parents say: foreign and yet comforting, awful and yet amazing.

Our first 48 hours were all over the place. He did okay, then he did well, then he did worse, then he did worse again, then they switched him to a different style of ventilator.

Finally, in the wee hours of day three, blood test results came back looking better – "I'm so relieved," our specialist said.

During this time, he was kept permanently paralysed with a drug, to stop him fighting the tubes. He had surgery on day six, came off the drug a few days later, then dropped the ventilator and started to feed.

Progress seemed painstaking, even though it was fast. We sat on stools by his open incubator.

Every day was long. Every stage had its own distinct torture: watching him inert, then watching him cry soundlessly with the tube down his throat, then watching him squirm in pain, or throw up a feed, or lose weight.

All this was mixed with the mundane. We ate countless lunches at the hospital cafe. We drank huge amounts of water because of the heat in the unit. It was a daily battle finding a spot in the carpark.

The staff were fantastic – nurses and doctors. They explained what all the numbers meant, so I could follow them obsessively. They told us their stories. They taught us how to look after him without us even realising it.

We went home three days before Christmas, and now he's crawling like a torpedo around our wooden floors.

Premature twins come at worst time - in the middle of calving

No time is ideal to have your babies in the neonatal unit, but Tracey and Matt Honeysett would have been grateful if their boys had arrived during a different month of the year.

"We're sharemilkers in Masterton," says Mrs Honeysett, 29, new mother of twins Eli and Isaac. "It's been pretty stressful. We're in the middle of calving at the moment."

So the challenges of birth are not lost on them. For much of the twins' first six weeks, Mr Honeysett travelled between Masterton and Wellington, staying with his wife at Ronald McDonald House.

Every step toward parenthood so far has been full of surprises.

"I never imagined twins, I never imagined them being early. Everyone, when they get pregnant, imagines having the normal birth and going home a few days later," Mrs Honeysett says.

Eli and Isaac were born at 32 weeks by caesarean, a month earlier than planned because Eli was looking small and Mrs Honeysett's blood pressure was high.

After four weeks in Wellington Hospital's neonatal intensive care unit, with scarcely a stumble, they were transferred to Masterton Hospital as a stopover on the way home.

But Isaac developed an infection, which saw him stop breathing briefly while he was feeding. Soon the boys were on a helicopter back where they'd come from.

"As soon as we knew that Wellington was coming to get us, we felt quite reassured," Mrs Honeysett says.

Getting her head around all the hospital equipment has been a challenge, she says. "You start talking like nurses and using all the jargon."

Experience makes new mum want to be a nurse

When Kyra Poinga found out during pregnancy that her baby had a condition with an unpronounceable name, she did some modern-day sleuthing.

The 15-year-old from Lyall Bay logged on to the internet, typed in "gastroschisis" and very quickly started worrying. "It was kind of hard to imagine. I went away and Googled it. It came up with photos – it's not a nice thing to look at."

Babies with gastroschisis are born with their intestines outside their stomach, due to an opening in the abdominal wall.

As soon as Kyra's daughter, Arleigha, was delivered, she was put into a saline bag from the waist down to keep her bowel moist. Surgeons operated on her the same day – before Kyra even got to the unit. "Actually I slept for quite a while. By the time I had woken up that day, she was all better," she says.

Not being able to hold her little girl was the hardest thing. "My first hug with her at four days was the best part. Just staring at her through the incubator was really hard."

Arleigha has faced minor setbacks with feeding but her operation was successful and, at six weeks, she's doing very well.

Kyra says the nurses have been so amazing that she's changed her career plans since spending time there. "That's what I want to do – be a neonatal nurse."

Neonatal unit great  - but they won't miss the machines

Debs Kidson reckons she already knows the personalities of her three little girls.

"Emily's very much an attention seeker. She doesn't like it if one of her sisters is having a cuddle and she isn't," says Ms Kidson, 24. On cue, from a cot behind her mum, Emily, born 915g grams, starts to cry.

"Tess [born 1105 grams] is very much the authoritative one, the ringleader of the pack."

Which leaves Ashleigh, born 1115g.

"Ashleigh's my cruisy baby. She's easy-going," says Ms Kidson.

The triplets, born at 28 weeks and five days, are now seven weeks old.

"They've obviously got the normal prem issues," Ms Kidson says – being unable to suck for the first few weeks, needing oxygen to help with their breathing and so on. "But they're doing really well."

Her partner, Ricky Krieg, 25, says life has grown much simpler for him: "I go to work, come here and then sleep."

Ms Kidson says the toughest part about being in the neonatal unit is the machines that flash and sound off urgently – even when there's nothing to worry about.

"You don't know if there's anything wrong or not."

The triplets were a big surprise, but the nurses are helping ease that, Ms Kidson says. "They just sit down and they'll explain everything and talk to you. If they weren't here, I think we would have collapsed."

As for getting back into normal life, how do you go to the supermarket with three little babies?

"You don't," says Ms Kidson, with a rueful laugh.

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