Premature birth: How families who lost multiple babies gained another chance at parenthood

Rotorua parents Casey Pauling and Ryan McLean lost two pre-term babies, Harry and Monty, before having Maika (middle). “The love you have after loss – it is just the best feeling," Casey said. Photo / Mike Scott

• Pre-term birth is one of the biggest killers of babies in New Zealand – and rates are rising.
• Little has been done to reduce pre-term rates, which disproportionately affect Māori, Pacific and Indian families.
• A group called the Carosika Collaborative will today launch new national guidelines for doctors, midwives and parents.

After losing two premature babies, a Whangārei mother was optimistic her third pregnancy would be different.

Onchuma Pumsuk-Eldby was in her late teens when she lost a baby boy at 20 weeks’ gestation and a baby girl at 19 weeks. There was limited support at her local hospital for pre-term births.

When she became pregnant again in 2021, aged 35, she was in a better place. She was married, owned a house and was starting to feel her past losses were simply bad luck.

“I guess we felt invincible, that nothing could go wrong,” said her partner Lars Eldby.

“But it did.”

Onchuma’s water broke at 16 weeks’ gestation and she lost a third baby, named Jordy, at Whangārei Hospital. She and her husband had already begun imagining their new family life and making plans.

“For me – it was the son with the woman I married,” Lars said. “The year after that was the worst time in my life. Mentally, neither of us were doing well, it really tested our marriage out. There’s a lot of grief, a lot of loss, and a lot of whys, like, why did this happen?”

“I just didn’t know what was wrong with me,” said Onchuma.

Lars Eldby and Onchuma Pumsuk-Eldby with their daughter Lyla. The couple lost three babies preterm before Lyla was born at 36 weeks.

Casey Pauling, from Rotorua, was 29 years old when she first became pregnant. It had taken her and her partner Ryan two years to conceive. She was still working and “cruising” at 19 weeks pregnant, when she suddenly felt the urge to push while she was in the office.

She rushed to an urgent care clinic, then Rotorua Hospital, but doctors were unable to save the baby, who she named Harry. The hospital did not have a gynaecology unit and she did not qualify for maternity care so she was transferred to the orthopaedic unit to have Harry’s body delivered by the nurses there. She grieved her lost child while patients around her complained about their sore hips and joints.

“It was a real shock because I had no idea about pre-term birth,” Casey said. “I’m a nurse and I just had no idea about the signs or symptoms or anything.”

For her second pregnancy, she had an operation called a cervical cerclage, in which a stitch is placed at the neck of the womb to prevent the cervix from opening too early during gestation. But the stitch didn’t hold, she said, and she had her second baby, Monty, at 24 weeks. It was too early, and he didn’t survive.

“I was just a mess,” she said. “I would only go out of the house to walk the dogs and ride my bike and visit the forest. But other than that, I would just hide away from the world, because I felt like this crazy grief, but then I also felt weird emotions. I felt jealous of other people when I’d see them with babies. It was just this rollercoaster.

“All I wanted in life was to have a baby, but I thought it’s not meant to be.”

Biggest killers

Pre-term birth is one of the leading causes of death for babies in New Zealand. Those who survive are at higher risk of lifelong disability or complications, including cerebral palsy or learning difficulties when young and heart disease or diabetes as adults.

About 4500 babies a year are born in New Zealand before 37 weeks, which is defined as pre-term. Any baby born before 34 weeks is likely to need additional care, and those born before 28 weeks could have long-term complications. If they are born at 23 weeks, their chance of survival is around 50%.

It is a problem that is getting worse. Premature birth rates rose from 7.4% in 2009 to 7.9% in 2021 – the latest data available. And there are inequities, with higher rates among Māori, Pacific and Indian parents and those in rural areas.

Multiple reviews over 15 years have recommended that successive governments take action but little has been done, experts told the Herald.

Part of the problem is that pre-term birth is complicated, says Dr Katie Groom, Professor of Maternal and Perinatal Health at the University of Auckland’s Liggins Institute. It is not a disease but the end result of a number of different factors.

Around two-thirds of pre-term births are spontaneous, when a mother goes into labour early. The rest are because the mother or baby is sick. Within both those groups are multiple causes, which makes it challenging to address as a health issue.

There is also another barrier, Groom says.

“I don’t think there is anywhere in the world an appetite to invest in women and children’s health. People [are drawn to] the high-tech, super-sexy stuff, they call out the cancers, the cardiovascular disease, the end-of-life stuff. And I don’t think people see – madly – the value in a healthy start to life. There is no investment from pharmaceuticals. There’s no investment from big diagnostics, because you don’t make money out of it.”

Other countries are making significant progress in this area. Australia has the Preterm Birth Prevention Alliance, which has been given $14 million in funding to introduce a preterm birth prevention programme. The UK has Saving Babies Lives, an initiative that includes a target of reducing pre-term births by 20%.

Action at last

New Zealand has lagged behind but that could be about to change. Today, a group of researchers and NGOs called the Carosika Collaborative will publish the first national guidelines for pre-term birth. The National Best Practice Guide, called Taonga Tuku Iho, aims to provide a one-stop shop for doctors, nurses, midwives, health leaders and parents.

It has been an exhaustive, painstaking exercise, taking four years and with no certainty of ongoing funding. The collaborative – named after a baby girl who died at 24 weeks – searched for and graded all relevant guidelines on pre-term birth around the country. They found 230 separate guidelines, and only a third were given “high-quality” grades – meaning most were out of date or not backed by robust evidence. Many of these poor guidelines were being used in regional hospitals.

The collaborative has now pulled together the “gold standard” guidelines and is making them accessible to everyone in one place.

Scanning a dedicated website, Groom pulls out an example. When a baby is born early, the best advice is to wait 60 seconds before clamping their umbilical cord. This alone improves the chance of survival by 30% in babies younger than 30 weeks.

“That’s a pretty phenomenal, simple measure,” Groom said. “But only about 50% of [pre-term] babies in this country get that. They would be clamped immediately because people just don’t know.”

Another example: if a pregnant mother presents at a hospital and is contracting prematurely, she should be tested to see if she is going into labour. These tests include measuring the cervix and taking a swab. If the tests show the baby is going to come in a week or two, she should be transferred to a hospital that has the facilities to look after a premature baby. Babies born before 32 weeks need to be transferred to a pre-term birth clinic, of which there are only six around the country. This will significantly improve the baby’s healthy outcomes, compared to being born in a regional hospital or rural unit.

The next challenge for the Carosika Collaborative is making sure that every midwife, GP and hospital specialist in the country uses the new guidelines. That will require support from Health New Zealand Te Whatu Ora, which has funded the collaborative for three years but is now operating in an extremely constrained financial climate.

Some of the funding for the Best Practice Guide came from the Health Research Council, which is now facing cuts. There are also other hurdles to tackling the pre-term birthrate, including a dwindling, overworked midwife workforce.

Health NZ and the Ministry of Health said they were highly supportive of the collaborative’s work.

In a statement, Health NZ national chief midwife Laura Aileone said pre-term birth had a broad effect beyond the health and wellbeing of an individual whānau. When a baby required a long stay in neonatal intensive care, there were significant psychological and economic impacts on the family, communities and health system.

Aileone said Health NZ would work closely with the collaborative on the implementation of the guidelines, using its National Maternity Clinical Network to ensure there were consistent approaches to pre-term birth care across the country.

Ministry of Health chief clinical officer maternity Heather Muriwai said several initiatives were under way to address pre-term birth issues, including a workforce plan to recruit and retain midwives, and the Kahu Taurima programme, which focuses on providing integrated care over a child’s first 2000 days.

Love after loss

Groom also works as a maternal fetal medicine specialist at Auckland City Hospital. In that role, she sees patients who have had problems with pre-term births.

“People just don’t even know,” she said. “They know what cancer is. But really educated people say to me ‘I didn’t know about pre-term birth, I didn’t know it could happen to us’.”

At her desk in the Auckland Medical School building in Grafton, she has a small figurine of herself as a superhero – a gift from an international conference. Her patients say she not only saved their babies’ lives but their marriages too.

“We felt like we’d met the Wizard of Oz,” one of her patients said. “What she has created with that team is beyond anything I’ve encountered anywhere in my life.”

Dr Katie Groom, Professor of Maternal and Perinatal Health at the University of Auckland’s Liggins Institute. Groom is leading work on New Zealand's first national guidelines for preterm births.

After their excruciating pre-term losses, both Casey and Onchuma were referred to Groom. Both of them were scared and uncertain about trying for another baby, but were reassured it was possible.

When Casey became pregnant at age 30, she again had a stitch placed in her, this time in the abdomen and before she became pregnant – a major operation that is only done in a few units around New Zealand. Once pregnant, she drove to Auckland every two weeks for check-ups, while also seeing a local obstetrician.

She passed the 20- and 24-week milestones, which was when she lost her previous babies. At 26 weeks, she felt she could begin relaxing for the first time.

And at 38 weeks, she gave birth to a boy, Maika, in Rotorua Hospital.

“Oh, it was crazy,” she said. “The love you have after loss – it is just the best feeling.”

While pregnant with Maika, Casey Pauling had surgery to ensure he was not born too early, and regular monitoring at Auckland City Hospital. He was born at 38 weeks. Photo / Mike Scott

Some sadness lingers. Casey still thinks about whether Harry and Monty would have lived if they had the same care as Maika. She now knows she has one of the risk factors for pre-term birth – a procedure on her cervix, which doubles the possibility of an early birth. She also thinks about parents in remote areas – the East Coast, the backblocks of Bay of Plenty – who may not have ready access to care.

Maika is now 2 years old, and Casey is able to talk to him about his brothers. When the family goes on holiday to Lake Tarawera, Maika calls their names.

“He says they’re in the sky. He points up to the mountain and says ‘Harry’, ‘Monty’.”

Onchuma, from Whangārei, became pregnant with her fourth baby last Easter. She was given a cervical stitch, and when that appeared to be failing, she was given a further stitch. She had three months of bed rest, at Auckland City Hospital then Ronald McDonald House.

At 26 weeks, she was advised by doctors of all the possible outcomes, and she told them if the baby was born from this point, she wanted it to be resuscitated. She would not lose another child, she said. Doctors gave her steroids to mature the baby’s lungs in case it was born early and its body had not developed enough.

Onchuma Pumsuk-Eldby's daughter Lyla was born at 36 weeks. She had surgery, months of bed rest and regular monitoring during her pregnancy to ensure Lyla arrived safely.

In the end, Onchuma made it to 36 weeks. The stitch was removed and she immediately went into labour. At the fourth attempt, she had a baby girl: Lyla.

“It was quite surreal, to see her, to have skin-to-skin,” she said. “She just looked at me – it’s like she knew who I was.

“I was terrified of going through another round of losing Jordy – it broke me,” Lars said. “When Lyla came into this world, I couldn’t believe it. I’ll never forget it. It was a beautiful thing.”

Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics and social issues.