Kristin Sarten's daughter Emily was born at 24 weeks. Photos / Kristin Sarten
Each year, around 4800 babies in New Zealand are born prematurely - earlier than 37 weeks gestation. Another 1000, approximately, will be born with a severe illness or condition that requires treatment in a newborn intensive care unit (NICU) or special care baby unit (SCBU).
The parents of these babies have to navigate a rougher start to their newborn’s life than they expected, with some spending weeks or months in hospital.
New Plymouth mother of two Kristin Sarten’s daughter Emily was born at just 24 weeks and 3 days gestation.
“I went into premature labour in New Plymouth, and then I was helicoptered down to Wellington Hospital,” Sarten, 41, tells the NZ Herald.
Three days later, Emily was born. The labour itself went smoothly, but Sarten and her husband knew it wouldn’t be an easy start for their daughter, being born 16 weeks before her due date.
“Before I had gone into labour, I’d been able to speak to a paediatrician who had given us an idea of what life might be like if she did arrive [early] - so it was quite helpful having some of that knowledge on board to know what to expect, not that anything can prepare you for that.”
Emily was ventilated and went into a high dependency room within the NICU, where she would spend the first three and a half months of her life, before spending another month at Taranaki Base Hospital.
She would face a number of challenges along the way, including a “significant” brain bleed, Staph aureus and Group B strep.
“That was quite daunting,” Sarten says. “She came pretty close to losing her fight.
“She took quite a few steps back after that point, but she responded really well. Where she is now, she’s amazing - as far as we’re concerned there’s been no long-term effects.”
Sarten didn’t expect the NICU would become home for so long, describing the experience as a “hard slog” at times.
“In those first few weeks, there is so little change. It just feels like it goes on and on forever, and then suddenly they just start growing and getting better and there’s lots of progress.”
One of the toughest parts of the journey was being apart from her husband and son, who was just two and a half at the time, though they visited on weekends.
Sarten holds back tears as she remembers hearing that she and Emily would be helicoptered back to Taranaki Base Hospital.
“It was just so overwhelming... it’s never confirmed 100% that you’re going, if there were emergencies that the flight would need to tend to first.
“Basically, it’s not until you’re in the air that you actually know that you’re on your way. It all happened very quickly. I was told in the morning and then by three o’clock we were in the ambulance.”
As Sarten left the Wellington NICU with little Emily in a portable incubator, medical staff lined the hallway and clapped.
“Being walked out of the unit, they had a guard of honour, doctors and nurses.”
What followed was a month of commuting to the hospital to feed Emily. At 130 days old, Sarten’s little girl finally got to come home. Now, she’s 23 months old, with a corrected age of 19 months - her chronological age minus how many months early she was born.
She’s walking - “the drunken kind of walk”, her mum adds jokingly - and talking.
“She’s just a chatterbox. She’s doing everything that a normal 19-month baby should be.”
Sarten’s advice to other parents of preterm babies is to take care of themselves as well as their little ones, as difficult as it may be when you’re away from home.
Support from neonatal charity Little Miracles Trust and Ronald McDonald House proved invaluable, providing practical help from meals to baby items.
“It’s just one less thing you have to worry about.”
She also underwent counselling to help her process her experience.
“It’s only once you’re out the other end that you tend to look back and reflect a little bit more, and you realise that was actually really traumatic and that was really hard.
“Even though Emily’s outcome has been really positive, others might not be so lucky. I think getting help that way can help process things a little bit because [when] you’re in it, it’s just one day after the other and you just try and get through.”
Ella Shapland and her partner Reed, from Ashburton, welcomed their first child, Nova, at 27 weeks and 3 days gestation.
Ahead of the birth, Shapland, 28, recalls that one morning she couldn’t feel her baby moving and went in for a scan.
“Everything came back normal, and then they put me up to a monitor and they were testing our heart rates and then her heart rate kept dropping, and mine skyrocketed - so they just told me that she was going to be coming out,” she tells the Herald.
Just a few hours later, Nova was born via emergency C-section. She would spend the first 80 days of her life in the NICU at Christchurch Women’s Hospital.
Shapland describes that time as a “rollercoaster” waiting for Nova to gain weight, but is thankful she didn’t have to undergo any major procedures while there.
“It was just hard being an hour away from my partner. He was at home Tuesday, Wednesday, Thursday, and then would come up for the weekend. Doing it on my own was pretty hard, but I made some really good friends in the NICU as well.
“The doctors and nurses, and everyone in the NICU were fantastic.”
For Shapland, it was a time of uncertainty - from not knowing when they’d be able to leave, to watching the babies in the unit progress differently.
“Watching other babies do things before Nova, or Nova would do something first and then the other babies - it’s just trying to keep in your own wee bubble, but also trying to support everyone else there.”
In the NICU, Shapland befriended another mum from Ashburton whose baby girl was born the day after Nova, also at 27 weeks.
“We were able to connect and catch up, we stayed next to each other in Ronald McDonald House, and we were always next to each other throughout NICU as well, which was quite cool. We got really close with them, because our babies were literally the same age and doing the same things.”
Getting the all-clear to go home was “amazing”, she says.
“It was pretty scary though, bringing her into the big wide world with all these germs. I was just so worried, because she was so early, about the consequences.
“Because nothing really major happened in NICU, I was always waiting for it. Like, ‘oh no, we’re going to go to the supermarket, she’s going to get something, get really sick’. But it was amazing to be home.”
Now 21 months old, Nova is “a fighter”, her mum says.
“She’s amazing. She’s doing everything a baby should, so you’d never know she was a prem baby, other than she’s little.”
Her advice to other NICU parents is to take it day by day and celebrate the “small wins”.
“Trust your gut, fight for your baby, don’t be afraid to ask questions, even if you think it’s a dumb question.”
It’s tough for Kiwi parents of babies in the NICU - but it’s also incredibly challenging for the nurses who care for them.
Speaking to the Herald anonymously, nurses from the Neonatal Nurses College Aotearoa reveal what it’s like working in a NICU in New Zealand.
“A day as a NICU nurse is fast-paced and also highly rewarding - meeting families and getting to know their baby,” one nurse shares.
Another describes their typical day as “Busy, overstimulating, rewarding, emotional - feels [like] more than a day’s work”. On a practical level, most days involve “bloods, cares, emotional support, advocating for babies, going for scans, developmental care and parental support”.
“Anything from helping resuscitate babies straight after birth to helping a family get ready to take their new baby home - walking with families through lots of ‘firsts’ and different experiences,” another adds.
It’s a role that involves daily sacrifices.
“Turning up, no matter what is going on in your personal life, receiving your patient load and giving your all, as best as possible, over and over - knowing even the smallest amount of negativity can [have an] impact,” another shares.
It comes with its challenges - particularly when they are under-resourced, juggling multiple cases, and dealing with stressed parents and poor outcomes. Sometimes, palliative care is part of the job. Not every one of these babies gets to go home.
“[The] toughest part is when things go wrong with a baby or the family they are going home to. It’s also very rewarding walking alongside families through some of the toughest and most hopeful times of their lives,” one says.
Nurses say it can be difficult to know how to prioritise care when each baby in the NICU has such complex needs.
“When a baby is quickly deteriorating and needs many things all at once, you want to do the best you can - but it feels challenging morally and can leave you feeling very disappointed in your own abilities.”
For one NICU nurse, the hardest part of the job is “walking alongside whānau through heartbreak”.
“And the negative self-talk when you are worried you could do better.”
Another describes the pain of witnessing parents’ grief for their baby.
“Seeing mum and dad crying can be very upsetting... nothing is more rewarding than getting big hugs from families in the hallway and a smile, knowing you made an impact.”
For these nurses, the support of their coworkers gets them through each day.
“I also love my working environment and all of my colleagues - we are in it together and can support each other through the lows and highs of the job.”
Around 50% of Kiwi families who spend time in a NICU will experience symptoms of stress, depression and anxiety as a result, according to New Zealand’s national neonatal charity Little Miracles Trust.
“Up to a third of those will have a long tail of impact of trauma, including PTSD,” says the charity’s CEO Sarah Rusholme.
“They can take days, they can take weeks, they can take months to manifest.
“It’s such a stressful and traumatic period. It’s just not what people plan for or expect - not being able to have things like skin-to-skin contact with your baby for those first few days, or even longer if it’s an extremely premature baby, can really affect you.
“If we can provide support to make that difficult start a little bit easier, then that’s what we’re here to do.”
There are six neonatal intensive care units and 17 special care baby units around New Zealand.
The latter offer “that additional layer of care and expertise”, while the NICUs are home to the “intensive, specialist level 4 cots” for the most vulnerable, according to Rusholme.
The charity’s staff members organise weekly social morning teas for families in the NICU and work with volunteers who help provide emergency care packs including onesies, baby clothes knitted by volunteers, breast milk bags and milestone cards, and run playgroups for parents navigating life after NICU.
Within the number of premature babies born in New Zealand each year, “the numbers of Māori, Pasifika, and Indian pēpi born too soon are increasing,” Rusholme says.
“So it’s really important that we are thinking about ways that we can improve outcomes for all of our communities across Aotearoa.
“A lot of babies are there for a quick fly-through - which is not to say it’s not an absolutely stressful and traumatising experience, however long you’re in the unit. We’ve got families at the moment who have been in units for several months, they’re marking their 100 days.”
To learn more or to donate to Little Miracles Trust, you can visit their website here.
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