Two weeks ago Kiwis learned Breakfast's Hayley Holt had lost the baby boy she was expecting in July, sparking an outpouring of support around the country.

For thousands, the passing of the TV host's first child was all too familiar. They had shared the same experience, sometimes in silence.

Adi and Ofa Koloamatangi with memories created by Baby Loss NZ for them after their lost their four babies to miscarriage. Photo / Alex Burton
Adi and Ofa Koloamatangi with memories created by Baby Loss NZ for them after their lost their four babies to miscarriage. Photo / Alex Burton

They tell Cherie Howie about their "angel babies", and why they want to shine a light on the little lives who leave the biggest loss.

Ofa Jr came first, a week before Christmas 2018.

Their firstborn arrived with his dad's looks, and left with his name, mum Adi Koloamatangi says.

"He was big for his months, he was quite long. He looked exactly the same as my husband - his fingers and toes, and his eyebrows. My husband has thick, beautiful eyebrows."

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Ofa Jr came too early to survive, but his little heart beat for three hours before he succumbed in his father's arms as his mother underwent surgery to remove her baby's placenta.

Temisia Jr, named for his uncle, was next, entering his parents' lives just over six months later. He was different from his big brother - his heart didn't beat, and he looked like his mum.

"He had my nose, and my hairline," Koloamatangi says.

She laughs.

"And his neck - he was chubby. He had these little rolls."

This month, it was little Leila who swelled their hearts with pride.

She was the feminine version of her dad, and it was love at first sight, Koloamatangi says.

"As soon as my husband saw her he said, 'She is so beautiful'."

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Her heart beat for an hour.

Baby Loss NZ has framed copies of casts of hands and feet of babies from 10 weeks to 40 weeks gestation who died. The lower portion is casts of a living child. Photo / Alex Burton
Baby Loss NZ has framed copies of casts of hands and feet of babies from 10 weeks to 40 weeks gestation who died. The lower portion is casts of a living child. Photo / Alex Burton

Little Leila was one of two.

Her twin brother, Samisoni, remained in his mother's womb, but after his sister's placenta didn't come out naturally, the couple were told the remaining pregnancy must be induced, and it would be too early for their unborn son to survive.

"I didn't want to do it, I felt so guilty," Koloamatangi says.

"I was aborting my own baby. [The doctors] said, 'You are at high risk of getting an infection'
... I was at risk of dying myself.

"It was so hard."

Samisoni looked like her, Koloamatangi says.

"He had my nose, my headline, my fingers. And you could see the fingernails starting to grow, and the toenails."

She could see her little boy's heart beating too.

"At certain times he would fidget, but I knew he couldn't survive."

All Adi and Ofa Koloamatangi's children measured between 16.5 and 19 centimetres tip to toe, weighed from 113 to 170 grams, and entered the world - at 17 weeks' gestation - too early to survive.

Fairly common

The Māngere couple are among thousands of New Zealand parents every year who experience the loss of a baby before, or almost immediately after, birth.

Before 20 weeks' gestation the Ministry of Health defines the loss as a miscarriage, something which is "fairly common - about one or two out of every 10 pregnant women miscarry", according to the ministry's website.

Other experts, including the New Zealand College of Midwives, put the figure at around one in four women, with more than 95 per cent of miscarriages occurring in the first 12 to 14 weeks of pregnancy.

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Some begin and end naturally, sometimes even before a pregnancy is known, others require medical attention.

But whenever they take place, the babies lost as a result are not registered with Births, Deaths and Marriages, so exact numbers aren't known.

Sands New Zealand, a charity which supports families grieving the loss of a baby, estimates somewhere between about 5900 and 11,800 occur each year, based on the ministry figure of 10 or 20 per cent of pregnancies ending in miscarriage and the annual live birth rate, which was 59,637 last year.

Unborn babies who die after 20 weeks' gestation are registered as stillbirths, which occurs in about one in every 200 pregnancies, according to the ministry.

Those born after 20 weeks' gestation, or weighing at least 400 grams if gestation is unknown, and who show signs of life - such as a heartbeat or pulsation of the umbilical cord - are considered, up to the age of 28 days, a neonatal death.

According to the most recent Perinatal and Maternal Mortality Review Committee report there were 288 stillbirths and 172 neonatal deaths - 137 of those occurring in the first seven days of life - in 2017. The stillbirths and neonatal deaths were among 60,454 births that year, according to the committee, which independently reviews the deaths of babies and mothers.

But while their children aren't counted in official figures, parents of babies lost before 20 weeks should be treated no differently to those who suffer the same loss later in pregnancy, Sands baby loss educator Vicki Culling says.

Just as those who lose their babies later in pregnancy, but before birth, should also not be deprived of the same support as a parent whose child dies after birth.

All loss is deserving of grief, says Culling, who became involved in Sands after her daughter Aster was stillborn 10 days overdue 22 years ago.

"We often equate the amount of sympathy or grief to the size of the life, and that's not how it works. But when we don't know anything about baby loss, well of course we think like that.

"And then it becomes hard for parents, when they're still sad, and the people around them think the little life doesn't deserve that much grief. But of course it deserves all the grief it deserves."

The strapline for Sands, formed in New Zealand in 1986 by Rosemary Westley after her daughter Holly was stillborn, is "A Little Life, not a Little Loss", and the charity remains "really staunch" on avoiding any hierarchy of loss, Culling says.

"It may have been a little baby, it may have been 10 weeks' gestation. But we don't ascribe measurement to a baby's worth."

93-year-old's baby loss grief: 'Still as real as it was in 1958'

Jim and Flo Pennycook in 2019. The couple's first child was stillborn in 1958. Photo / Bianca Hawk / www.bianca.co.nz
Jim and Flo Pennycook in 2019. The couple's first child was stillborn in 1958. Photo / Bianca Hawk / www.bianca.co.nz

When Holly was stillborn, Westley's treatment in hospital - including her daughter being given to her in a paper shawl "not unlike the paper towels found in public toilets" - prompted her to start Sands.

Sarah Numan was motivated by a similar experience in 2007.

The Papakura mum founded Baby Loss NZ, a free service, after her son Noah was stillborn at 26 weeks in 2007. She also lost daughters Willow, Ebony and Hope at 10, 15 and 19 weeks' gestation respectively between 2003 and 2013.

"Noah was wrapped in a black bag in front of me and taken away for post-mortem, and I didn't have a voice to say, 'Stop'."

She now makes sure other grieving parents - as far as Baby Loss NZ's limited funds stretch - don't suffer the same heartache.

Every parent of a baby lost as a result of early loss - Numan doesn't use the word miscarriage - neonatal death or stillbirth at Middlemore Hospital and Starship PICU is helped by her and, in Christchurch and South Waikato, by other volunteers, to "make memories" with their baby.

A care box with memory books, a split heart necklace and two teddies - one to stay with the baby and one with the parents, before being swapped at the final goodbye - are given, and she also arranges to take photos and hand and foot prints.

Especially treasured by some families are the castings Numan does of tiny fingers and toes - the youngest just eight weeks' gestation.

Photos and prints are flat, but casts are 3D, and help parents feel connected to their baby.

"It allows parents to hold their baby's hands and feet again."

Sarah Numan started Baby Loss NZ after her son, Noah, was stillborn at 26 weeks. Photo / Alex Burton
Sarah Numan started Baby Loss NZ after her son, Noah, was stillborn at 26 weeks. Photo / Alex Burton

She also sometimes helps parents bathe and dress their child, providing "dignity for baby and memories for parents".

"[It's about] being able to acknowledge these babies are your babies, they always will be your babies. To have that hidden away, or to not do anything around that, it's almost like you've got this big secret.

"What we're finding is the more involvement you can have with baby - parenting baby, making memories - that is one of the biggest tools of learning to live with your grief."

A community of volunteers support Baby Loss NZ to help around 200 families a year, and are mostly those who have suffered the same loss. Some funeral directors - Baby Loss NZ helps some families at funeral homes on request - also give their time.

Volunteers' stories of loss can be "horrific", Numan says.

"Our oldest member is 93 and she's only been able to publicly acknowledge her son for the first time two years ago, with our help.

"Because that's what they did [in the past], they took them away, and they believed if they took them away the parents would forget and wouldn't be sad and, 'They'll move on, they'll have another one and life will continue'."

Life did continue for 93-year-old Flo Pennycook and her husband, 94-year-old Jim.

But they were sad - they still are - and they never forgot.

The Auckland couple's first child, a boy, was stillborn in 1958. The baby was immediately "whisked away" and neither parent got to see him.

Speaking to the Herald through their granddaughter, Nikki Gibson, Flo Pennycook said their baby boy had never been forgotten.

"The pain is still as real as it was. It doesn't matter how old I get, it's like it was yesterday."

Flo and Jim Pennycook, pictured on their wedding day in 1947. The couple still grieve their first child, who was stillborn in 1958. Photo / Supplied
Flo and Jim Pennycook, pictured on their wedding day in 1947. The couple still grieve their first child, who was stillborn in 1958. Photo / Supplied

For Jim Pennycook, his son's death - at a time when fathers were kept out of the delivery room and, for the most part, out of the loop - was "so hard to process" and left him not knowing what to do.

The baby's room was cleared out before his wife left hospital because "that was what people did back then, thinking they were helping the mother", he told Gibson.

But all she wanted to do when she came home was "hold something that belonged to her baby", and talk about him, Flo Pennycook told her granddaughter.

But everything was gone, and people didn't want to talk about him.

The only keepsake the couple have is an undertaker's bill, and her grandmother told her for months after their loss she couldn't stop imagining that "the baby was wrapped in newspaper and thrown in the rubbish", Gibson says.

Years later Jim Pennycook did his own research and was told his son was in the baby's garden at Purewa Cemetery.

"But there's no particular plot," Gibson says.

"They actually have nothing ... [my grandmother's] still really clutching, because there's nothing permanent that says, 'Yes, your baby's there'."

'No, God did not need another angel'

It's not 1958 anymore.

But there's still work to be done in supporting those who lose their babies, advocates say.

Baby death is probably "one of those last taboo subjects people don't want to talk about", Sands New Zealand chairwoman Melanie Tarrant says.

"I think as a society we're uncomfortable with the thought of a baby dying."

Sands New Zealand chairwoman Melanie Tarrant says what parents grieving miscarriage, neonatal death or stillbirth need is for their loss to be acknowledged. Photo / Supplied
Sands New Zealand chairwoman Melanie Tarrant says what parents grieving miscarriage, neonatal death or stillbirth need is for their loss to be acknowledged. Photo / Supplied

She's lost four of her eight children - two through miscarriage, as well as her daughter Kate, just before 20 weeks' gestation, and her son, Zac, at 27 weeks' gestation - and knows that as a bereaved parent "all you want is people to acknowledge that baby".

It's also something she hears from those at Sands, which operates 21 volunteer-run groups around New Zealand, helps with care boxes, advice and fellowship after each loss.

"I've supported so many parents who've said, 'People haven't acknowledged it, and that's made it really awkward'. But actually a baby has died and nothing you can say could make it any worse than it already is for us."

Some comments should still be avoided.

Top of Numan's list - references to God and angels.

"No, God did not need another angel."

For Tarrant, being told she could 'have another baby' or that her loss 'must've been nature's way', was unhelpful.

"It's almost trying to minimise it. But if this had been anyone else who'd died, you'd never say ... 'oh, at least you can have another' or 'at least you've got other children'.

"You still want to have that baby you've lost."

It's better to simply acknowledge the loss - at the time and on future anniversaries and Mother's and Father's days - and then "just be there to support", Tarrant says.

"Because this loss will be with them forever. You learn to live with it, but you never get over it."

She hopes Holt has good support.

"I really feel for Hayley because it's such a traumatic experience to go through, and in the public eye it's another layer on it."

Breakfast TV host Hayley Holt, through her employer TVNZ, announced this month her unborn son had died. File photo / Dean Purcell
Breakfast TV host Hayley Holt, through her employer TVNZ, announced this month her unborn son had died. File photo / Dean Purcell

A Wellington mum who lost her baby at a similar gestation time - her daughter was stillborn at 28 weeks - has also been thinking about the Auckland mum now sharing the same experience.

Sands and other support she received had been a huge help, along with a conscious decision with her husband to "feel everything".

"Most people are afraid to feel grief."

The woman, who is Indian, doesn't know why her daughter died - investigations were inconclusive.

"It's scary that a baby can spontaneously die, and they can't tell why."

The latest Perinatal and Maternal Mortality Review Committee report found the rate of stillbirth in New Zealand has "reduced significantly since 2007", when 369 were recorded, and fewer babies of Māori and New Zealand European mothers were being stillborn.

But there's been no drop in stillbirths among mothers of other ethnic groups, in particular Indian, the report found.

Culling is especially keen for other communities, including Indian, Pacific peoples and Māori, to know about Sands.

"We have a lot of Pakēhā middle-class women approach us, because a lot of us are that ... but we want to include everyone."

She's also been involved in the Department of Internal Affairs' new online support service, Whetūrangitia, which put everything bereaved parents might need relating to legal and employment entitlements, funeral information and memory-making, into one website.

But more needs to be done make sure support, such as counselling, was consistent across the country.

Most district health boards say they provide counselling, but were actually referring people onto Sands, which survives almost entirely on donations and fundraising, Culling says.

"Unfortunately we also have that same postcode lottery thing cancer treatment has. If you have a baby die in one part of the country you might get a lot more support than in other parts, and sometimes that's down to if there's a strong and active Sands group in that area."

Sands New Zealand baby loss educator Vicki Culling wants more support those who suffer the loss of a baby. Photo / Tracey Grant Photography, Whanganui
Sands New Zealand baby loss educator Vicki Culling wants more support those who suffer the loss of a baby. Photo / Tracey Grant Photography, Whanganui

Culling also knew other expectant mums would now be "freaking out" after hearing of Holt's loss, reminding her of Kiwis' tendency "not to talk about loss to pregnant women, because we think it's gonna freak them out".

"So when babies do die, women are absolutely stunned. I have parents sitting in support groups saying, 'oh my God, we had no idea - in the 21st century, babies still die'.

"Yes, they do."

'Hi, my babies'

When Ofa Jr died, it was the first time Adi Koloamatangi heard the word miscarriage used.

"I thought I was the only one who had had a miscarriage."

She's sharing her story so others going through loss know they're not alone and that it's ok, especially for Pacific Island women - she and her husband are both Tongan - to talk about it.

Ofa Koloamatangi is telling his story so other men suffering loss know that although it's "very upsetting and draining" their "beautiful angel babies" are in a better place, and that memories created through Baby Loss NZ help with the grief.

"I will treasure their little hands and feet castings, and their clothes they once wore, photos and gifts. My babies have gone, but their spirit lives on."

Adi and Ofa Koloamatangi visit the shared grave of the four babies they've lost to miscarriage almost every day. Photo / Alex Burton
Adi and Ofa Koloamatangi visit the shared grave of the four babies they've lost to miscarriage almost every day. Photo / Alex Burton

The couple want to try for another baby in time, and with good medical support - Koloamatangi has been told she has a weak cervix.

But they will always be parents to their "fantastic four" who, wrapped in tapa cloths and sharing two caskets, are buried together in a single grave in Manukau Memorial Gardens' children's section.

They visit every second morning, sometimes bearing gifts - a pink "blanky" and a sunflower toy bought from The Warehouse en route was the most recent addition after Koloamatangi decided her daughter was surrounded by "too many boys' toys".

"And we always talk to them," she says.

"We say, 'Hi, my babies'. Especially our girl. We say, 'We hope your brothers are looking after you'."

Sometimes, after darkness has fallen over the city, they return again.

They like seeing the little lights they've put around their babies' grave.

"Our baby angels are always with us," Koloamatangi says.

And their little lights still shine.


For more information:

www.facebook.com/babylossnewzealand/
givealittle.co.nz/org/babylossnz
www.sands.org.nz