More babies die each year from Sudden Unexpected Death in Infancy (SUDI) in New Zealand than anything else. Olivia Carville investigates why the Government has shelved a simple device that could save lives.
Baby Ocean Pene died in her sleep, probably accidentally smothered by her sleeping parents.
She was not the first baby to die this way but child health experts say she could have been one of the last if authorities had listened.
Back in January 2008 in a white weatherboard house in Allen Bell Drive, Kaitaia, Ocean's parents awoke to find her cold and stiff in bed beside them.
Her fingers were clenched into tight little fists.
Every year, 50 Kiwi babies like Ocean die unexpectedly in their sleep, a rate that identifies New Zealand as the worst in the industrialised world for sudden infant deaths.
More than half of these babies are unintentionally suffocated by their parents while sleeping in the same bed.
Santana Warren was accidentally smothered to death by her mother. She was seven weeks old. Photo / Mike Scott.
A Weekend Herald investigation has found the Government has ignored a steady drumbeat of warnings and recommendations from coroners over the accidental suffocation of babies, stretching all the way back to Ocean's death more than eight years ago.
It has also found significant racial inequalities exist within these preventable deaths, with Maori babies eight times more likely to die.
Despite this hidden epidemic being called an "indictment on our society" by coroners, progress to prevent these deaths has been derailed by Government policy.
The Ministry of Health has secretly restricted the reach and influence of a homegrown safe sleep strategy linked in recent research to the first drop in Maori infant mortality rates in a decade.
The Weekend Herald found this through a two-month investigation based on more than 75 coronial findings, hundreds of pages of documents obtained through the Official Information Act and interviews with experts, doctors, health agencies and bereaved families.
This story begins with Ocean's death not only because she was Maori and living in Kaitaia - one of New Zealand's most deprived towns - but because it is believed her death marks the first time a coroner recommended Maori parents use a wahakura (a flax-woven bassinet) to safely co-sleep with babies.
The wahakura, or its $100 plastic sister the pepi-pod, was created in 2006 by Hastings GP Dr David Tipene-Leach, who was sickened by the unrelenting rate of Maori accidental asphyxiation deaths.
Robert Samuel Robert, aged one month, sleeps in a wahakura. Photo / Mike Scott.
Despite Maori babies representing only about 20 per cent of the population, they make up 65 per cent of Sudden Unexpected Death in Infancy (SUDI) cases across the country because they are more likely to be exposed to cigarette smoke, bed-share with their parents and live in low-income households.
The portable pepi-pod can lie in the parental bed, allowing Maori mothers the cultural custom of co-sleeping but diminishing the risk of death by giving the baby its own sleep space.
The device has been revolutionary; the Maori community has embraced it, leading SUDI experts have vouched for it, grassroots organisations have fundraised for it, coroners from all over the country have recommended it and international health networks have praised it.
For the first time in 16 years, new research shows Maori infant mortality rates have started to fall in regions with the highest number of pepi-pods.
Pepi-pods are portable bassinets allowing babies to safely sleep in bed beside their parents. Photo / Sarah Ivey.
But, documents obtained under the OIA, show the Ministry of Health - the sole agency with the power to roll out safe sleep devices nationwide - turned its back on pepi-pods in 2012 because of fears about their safety.
The ministry secretly tore up a $250,000 contract with the health advocacy group that was distributing the devices to at-risk families.
Last year, according to ministry documents, the Government dished out $800,000 of funding for eight DHBs to create "holistic prevention strategies" to cut SUDI rates, but the funding came with one condition: do not use the money to buy pepi-pods or wahakura.
When the Weekend Herald told coroners, health experts, academics and advocacy groups about the ministry contracts, they were outraged.
That withdrawn funding could have seen 300 Maori babies settled to sleep in pepi-pods rather than laid to rest in coffins, they argued.
"You want to know why we are we in this situation?" says Tipene-Leach.
"The answer is because the parents of dead brown babies don't vote."
The ministry rejects this criticism but says it "recognises the passion" of those working in this area and "accepts that their opinions are based on their observation and experience," Dr Pat Tuohy, the ministry's chief adviser of child and youth health wrote in an email.
"While pepi-pods and wahakura may well have protected some babies, the evidence that they are the 'magic bullet' for SUDI prevention is at best circumstantial," he wrote.
Requests to speak to Tuohy were denied.
'CORONER ON A WARPATH'
"When the police came I was holding her and rocking back and forth, screaming 'I killed my baby'."
Jamie Hancy woke on June 17, 2013, with her seven-week-old daughter's face cold and blue against her chest.
"I remember I kept saying 'I killed my baby. I killed my baby'," Hancy says softly, while plucking the leaves off the frogs, bumblebees, fairies and butterflies that cover her daughter's grave at the Papakura Cemetery.
Santana Lily Venelope Warren was Hancy's seventh child - her first had come at 18. She co-slept with all her babies, despite being warned of the dangers of bed-sharing.
She did this because she wanted the skin-to-skin bonding and because the advice she received from health professionals was confusing and contradictory, she says.
Some told her to place the baby on its side, others said its back. Some said to wrap it tightly in blankets and others said don't.
After Santana's death, Hancy's partner blamed her and she blamed herself.
"I was thinking about it in my head a lot. Thinking how could I do this."
For 56 nights in a row she trudged down to the cemetery to sleep on top of her daughter's grave.
It was winter and she wanted to keep her dead baby warm.
Santana Warren 24/04/13 - 17/06/13
Three years after Ocean Pene died in Kaitaia and three years before Santana Warren's death in Papakura, Coroner Wallace Bain declared war against health authorities for a lack of action over these deaths.
While investigating yet another accidental asphyxiation case, Bain said mothers were not being educated about safe sleep practices and "although loving their babies dearly and thinking they are doing the very best for them, they are in fact unwittingly killing them".
"In my view, the message is simply not getting out there to the level and extent it should. Babies in this country are dying unnecessarily," he ruled during the hearing into the death of a 6-week-old girl.
His condemnation was not directed toward the mothers of dead babies, it was a "criticism of our system and the information we impart".
An arm inadvertently draped across an infant during sleep was sufficient to cause asphyxia and mothers, particularly Maori mothers, needed to know, he said.
Before Bain's tirade went public in 2010, internal emails show Ministry of Justice officials sent a warning to the Ministry of Health.
Since then, increased funding, awareness and Government campaigns dedicated to safe sleep have seen New Zealand's SUDI rate drop to between 45 to 50 deaths a year.
But, despite the overall reduction in sudden infant death, the accidental asphyxiation rate for Maori babies has remained eight times higher than others, suggesting these investments have not been reaching those who need it most.
A CONTRACT WITHDRAWN IN SECRET
Historically, SUDI has been a controversial issue among Maori as many believe Government efforts to reduce the death rates have been too Pakeha-focused.
Maori babies are more likely to be exposed to smoke during pregnancy, which reduces their arousal mechanisms and makes them more vulnerable to silent suffocation.
They are also more likely to be co-sleeping with their parents and anti bed-sharing messages touted by the Ministry of Health (and produced only in English) do not fall in line with this Maori custom.
Against this contentious backdrop, the wahakura and pepi-pod were designed to support Maori traditions while reducing infant death rates.
At least 12 coroners have recommended wahakura or pepi-pods be given to at-risk families since as early as Ocean's death in 2008.
Professor Ed Mitchell of the University of Auckland is an expert in SUDI prevention. Photo / Mike Scott.
Internationally renowned cot death expert Professor Ed Mitchell, of the University of Auckland, believed in the device from day one.
"When David [Tipene-Leach] first invented the wahakura, I stuck my neck out very early on and supported this Maori initiative," he says.
With the right prevention strategies in place, such as a national pepi-pod programme and targeted anti-smoking campaigns, Mitchell believes New Zealand's SUDI rate could be cut down from 50 deaths a year to as few as five.
SUDI is the leading cause of death in Kiwi babies, killing significantly more than child abuse, cancer or any other illness.
Mitchell does not know why the Government still does not have a national SUDI prevention strategy or why it refuses to support or fund pepi-pods.
"Suffocation by definition is preventable and there is a solution, namely the wahakura or pepi-pod," he said.
"It's time for the Government to support this program."
Internal documents obtained by the Weekend Herald show in April 2012 the ministry drafted a contract with Change For Our Children, the social agency leading the charge on pepi-pod distribution.
The proposed contract was for $250,000 to supply pepi-pods "to vulnerable families throughout New Zealand".
Twelve days later, an email shows ministry officials held a meeting to discuss the pepi-pod contract and decided internally that the device might actually increase the risk of SUDI by "promoting bed-sharing".
Concerns raised in the email included babies overheating in the pods, the device overturning and babies hitting their arms on the plastic sides - all since labelled as "nonsense risks" by Mitchell.
His stance is backed up by the Ministry of Business, Innovation and Employment which in May declared wahakura are safe and did not need to be regulated because the devices "raise no concerns".
The fears of the Ministry of Health and the withdrawn contract were never discussed with Change For Our Children director Stephanie Cowan, wahakura creator Tipene-Leach, SUDI expert Mitchell or any of the coroners who had recommended the device.
Last year, the Ministry handed out an extra $800,000 to eight DHBs with high Maori SUDI rates but stipulated the money could not be spent on pepi-pods or wahakura.
When asked why the ministry did not discuss the contract or its concerns with experts, Tuohy said: "Ministry contracting decisions are done in line with Government procurement guidance."
Although the reach of pepi-pods has been hindered by the ministry, 14 out of 20 DHBs have shuffled funding to try and support the devices and 15,000 pods have been handed out to vulnerable families through grassroots funding.
Earlier this month, Mitchell, Tipene-Leach and Cowan co-authored a study that shows Maori infant deaths rates have recently dropped in regions with the highest number of pepi-pods.
New Zealand's midland region, which has the highest percentage of Maori births, received the biggest number of pepi-pods and saw the biggest decrease in infant mortality rates in the past three years compared to the three years previously, the study found.
This marks the first reduction in Maori SUDI rates since the year 2000. However, the Ministry of Health downplayed the significance of the study and cited other research that attributed the reduction in SUDI to alternative methods.
The pepi-pod programme has won two awards in Australia for innovation in healthcare and United States researchers are now collaborating with Kiwi stakeholders to try and roll out similar devices to African American communities with high rates of SUDI.
FATAL LACK OF FUNDING
Maori are not only the victims of this issue, but they are also the heroes, Cowan says.
In spite of the Ministry of Health turning its back to the pepi-pod programme, Maori have "embraced, used, shared and spread these devices.
"Those Maori rates are coming down because Maori have acted and Maori have led the change."
Mitchell agrees, but says the shortage of funding meant the pepi-pod was only reaching 25 per cent of at-risk families, even though it was created a decade ago.
The Weekend Herald contacted all 20 DHBs to find out how many pepi-pods had been distributed and discovered some regions had 3500, while others had zero.
The Government is "not putting any money behind this and we have a solution that works," Mitchell says.
"This is really the first time there's been a programme that's actually hitting the most disadvantaged, rather than hitting the most advantaged and trickling down."
Maori health organisations, such as Tipu Ora, have turned to seeking funding from local Rotary Clubs and other charitable organisations to pay for the safe sleep spaces.
"Babies are needlessly dying through a lack of funding from the health department for a cheap plastic bucket," says Raewyn Bourne, Tipu Ora executive manager.
"We know the need, we see the need and we see the difference they make."
Mereana Walden 15/11/14 - 22/01/15
Last June, the Ministry's Public Health Group wrote a report outlining potential purchasing options to prevent SUDI and suggested the Government fund a "universal production, distribution and recycling facility for all forms of portable safe sleep devices."
However, Tuohy told the Weekend Herald in an email that the Ministry was still "awaiting research" that proved pepi-pods were linked to a reduction in infant death rates.
"If you want your baby in your bed to sleep it is at higher risk of SUDI therefore it needs a safe space. A pepi-pod or wahakura may assist with providing a safe space. Whether it reduces SUDI is another question," Tuohy wrote.
Tipene-Leach believes it might be time to give up on the Government.
"It's possible we need to say to ourselves in the Maori community 'God damn it, the country is not going to do this so we better keep weaving hundreds and hundreds and hundreds of wahakura to fix this problem ourselves."
STILL LOOKING FOR ANSWERS
Three mothers in New Zealand have recently been convicted for being drunk or high when they accidentally smothered their babies while bed sharing.
Last month, a Taranaki woman who unintentionally suffocated her baby while breastfeeding was convicted of manslaughter.
In 2013, a Rotorua mother was sentenced to two years in prison after accidentally smothering her baby to death in the back of a car, drunk.
That same year, a Hastings mother was convicted of criminal nuisance after killing her baby while bed-sharing despite repeated warnings and being given a pepi-pod.
Although there have been cases of negligent, drunk or drugged parents, all babies who die accidentally squashed beneath their parents, suffocated by blankets or wedged down the side of beds are loved and deeply mourned.
"This is not deliberate, it's not infanticide," Mitchell says.
"I know families 20 years after their baby has died who are still looking for answers."
Hancy knows her daughter Santana would be alive today if she hadn't been sleeping beside her.
But, she also believes a wahakura or pepi-pod could have saved her life.
Santana's circumstances were almost a blueprint for at-risk babies: exposed to smoke, underweight and born to a low-income Maori family with a disclosed history of co-sleeping.
Had Hancy lived in a DHB region with a high number of pods, she would have been given one.
Instead, Santana was taken to the morgue in a white onesie covered with yellow ducks. When her body was returned to her family, her newborn soap smell had been replaced with the chemical odour of embalming fluid.
A month later, Hancy underwent tubal ligation to prevent her from having any more babies.
Mariameno Nicholson-Walden, 32, lost her two-month old daughter, Mereana, to SUDI from positional asphyxia last January. She was suffocated by blankets.
"I looked in the blankets and there she was just pale, sweaty and her lips were blue. All I could do was pray to God and say 'Help me, please bring my child back'."
Like Hancy, Nicholson-Walden had never been told about the pepi-pod.
As recently as January this year, a coroner ruled over the accidental suffocation of another baby.
At 10 days old Tanatiu Conmee-Evetts of Rotorua was smothered between his mother's breasts.
Eight years on from the death of baby Ocean Pene - almost exactly to the day - a coroner wrote that it would be difficult to imagine a more preventable death.
WHAT IS SUDI?
Sudden Unexpected Death in Infancy includes all deaths that occur in the first year of life that are sudden and unexpected.
They include accidental suffocation, particularly when bed-sharing, minor infections that wouldn't usually be fatal and the completely unexplained.
Babies that are born pre-term or have been exposed to cigarette smoke during pregnancy are particularly at-risk because their arousal mechanisms are not as strong.
"They don't fight," says leading SUDI expert Professor Ed Mitchell of Auckland University.
Many mothers wake to find their babies cold and lifeless right up against them, often touching, Mitchell said.
"Normally a healthy baby would be able to extract themselves from that or wriggle or turn their head. If you have a baby that's vulnerable or born pre-term or exposed to smoke, they don't have the arousal mechanism, they just lie there and suffocate."
THE SAFE SLEEP PEPE MESSAGE
PLACE baby in his or her own baby bed, face clear of bedding, in the same room as a caregiver.
ELIMINATE smoking in pregnancy, and protect baby with a smoke-free environment.
