'Institutional racism' behind funding decision

More babies die each year from Sudden Unexpected Death in Infancy (SUDI) in New Zealand than anything else. Read the full investigation here

The Government's refusal to fund a Maori safe sleep device that has been saving babies lives for the past decade has been labelled "institutional racism" by doctors and politicians.

Every year in New Zealand, 50 babies die from Sudden Unexpected Death in Infancy (SUDI), with more than half being accidentally suffocated.

Maori babies are eight times more likely to die from unintentional suffocation, largely because of high smoking rates and the cultural custom of bed-sharing.

Over the past decade, Coroners have repeatedly highlighted this inequality, while labelling these deaths a major public health concern and an "indictment on our society."

"If those were pakeha babies dying the Ministry would be going to extraordinary lengths to find an innovative way of saving them," said Hastings GP Dr David Tipene-Leach, who designed a safe sleep device called the wahakura to prevent these deaths back in 2006.

This criticism was rejected by Dr Pat Tuohy, Ministry of Health chief advisor of child and youth health, who said the Government funded $1.3 million on SUDI prevention every year, with two thirds specifically targeting Maori services.

"While pepi-pods or wahakura may well have protected some babies, the evidence that they are the 'magic bullet' for SUDI prevention is at best circumstantial," Tuohy previously said in a written statement.

Pepi-pods are portable bassinets allowing babies to safely sleep in bed beside their parents. Photo / Sarah Ivey.

The wahakura, a small flax-woven bassinet, can be brought into an adult bed to allow Maori families to safely co-sleep with their babies. A cheaper, plastic version - called the pepi-pod - has been rolled out to 15,000 at-risk families through grassroots funding.

Recent research has linked the $100 pod to the first reduction in Maori infant mortality rates in 16 years.

This study also found two babies died in pepi-pods, but researchers believed their deaths had nothing to do with the devices.

A Weekend Herald investigation found the Ministry of Health tore up a $250,000 contract to fund the pepi-pod behind closed doors in 2012 because of fears over its safety that were never discussed with experts or coroners.

The Ministry also gave eight DHBs with high Maori SUDI rates an extra $800,000 to further prevent these deaths last year, but said the money could not be used to fund pepi-pods or wahakura.

Mereana Walden 15/11/14 - 22/01/15

Tuohy said the pepi-pod was not funded because of a lack of scientific evidence that it helped save lives.

The Government has funded research in this area, which is yet to be published but which "may provide evidence of both effectiveness and safety of pepi-pods," Tuohy said.

However, New Zealand's leading SUDI expert, the medical community, academics, coroners, bereaved families and various MPs believe the evidence has been there for years, the Herald on Sunday found.

Kathrine Clarke, national manager of Whakawhetu, a Maori programme dedicated to reducing SUDI, said the Government has got it wrong.

"I absolutely think that babies lives would've been saved if they were given the option of wahakura or pepi-pod at the time birth and I believe that categorically going forward," she said.

Robert Samuel Robert, aged one month, sleeps in a wahakura. Photo / Mike Scott.

Professor Ed Mitchell, an internationally respected cot death researcher of the University of Auckland, has supported these devices since 2006 and called on the Ministry for funding.

New Zealand's SUDI rate could be cut from 50 deaths a year to as few as five with the right prevention strategies, Mitchell said.

Labour's deputy leader Annette King said the Ministry's response to the pepi-pod programme "beggars belief."

"That a Ministry of Health who are responsible for the delivery of health policy in New Zealand would ignore coroners and experts who are telling them we could go from 50 deaths a year to five is absolutely unbelievable," she said.

Former Chief Coroner Judge Neil MacLean agreed, saying he was "really quite puzzled and disturbed" over the fact that the Ministry had turned its back on pepi-pods without telling the Coroners who had been recommending the devices for years - and who continue to do so.

"My main reaction here is disappointment. These recommendations have been ignored and no one has explained why."

But Tipene-Leach believes the answer is simple: "Because this is a solution that has come from Maori communities."

"The institution is unable to adopt this methodology for saving babies because it's based on a Maori innovation," Tipene-Leach said.

In December 2015, Health Minister Jonathan Coleman responded to Green Party co-leader Metiria Turei's request that the Government give every newborn in New Zealand a wahakura, according to a letter obtained by the Herald on Sunday under the Official Information Act.

Coleman declined to speak to the Herald on Sunday for this story, but in the letter he wrote it would be "premature" to hand out wahakuras because further work was required to determine whether they reduced SUDI risks.

Turei claims evidence already exists to prove the safe sleep devices are linked to a reduction in SUDI, citing Northland District Health Board's significant drop in SUDI rates since the introduction of the wahakura.

"The Government knows wahakura are effective tools and they are refusing to support them. The ongoing neglect of these solutions means that babies will die."

Turei said she wrote to the Government because she wanted to know if it understood babies were needlessly dying.

"Their response to me is that they have no interest in those particular children and solutions to help save their lives," Turei said.

They are doing as little as possible for the families that need help the most."

However, the Ministry argued studies and "observational evaluation" had questioned the effectiveness of the device, citing that one in five families given a pepi-pod in Northland reported ongoing bed-sharing and a randomised control trial in Counties Manukau DHB found "no additional benefit in safe sleep knowledge or reduction of bed-sharing."

Experts told the Herald on Sunday that the Counties Manukau trial was an unfair representation of safe sleep devices because it compared the use of cots against pepi-pods rather than investigating whether or not the devices actually reduced SUDI rates.

Dame Tariana Turia, former Maori Party co-leader, said this issue boiled down to "institutionalised racism, whether you like it or not."

"At some point we have to own up and learn that inequity is caused because of the way in which programmes and services are designed and delivered," Turia said.

"If there were that many non-Maori babies dying would they respond in the same way?"