10 Mar 2021

Unexpected infant deaths on the rise, ministry to review $5m programme

7:13 am on 10 March 2021

A Ministry of Health programme set up to reduce sudden and unexpected deaths of babies in their sleep has not succeeded, and fatalities actually rose two years into the programme.

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Photo: 123RF

The ministry privately admitted to ministers that progress was "very disappointing", a conclusion experts in the field agree with.

The National SUDI Prevention Program was started in 2017 with the aim of bringing down the numbers of deaths recorded as the 'sudden unexpected death in infancy'.

Formerly known as "cot death", SUDI includes SIDS - sudden infant death syndrome - where no cause of death can be found. The deaths are generally in the first few months of a baby's life, and often in their sleep.

The $5 million a year programme started in 2017.

The most recent data showed there's been no improvement in the number of babies dying of SUDI.

In fact, in 2019, the ministry believes 52 babies died of SUDI - 24 percent more than the average between 2013 and 2017 of 42 SUDI deaths a year, documents released under the Official Information Act show. A death is only confirmed once the coroner rules the cause of death, which can take years, and this number may change.

Professor and GP Dr David Tipene-Leach, renowned for his work on SUDI, said the results were unsatisfactory.

"Very clearly, the National SUDI Prevention Program has not given the outcomes that everybody had hoped. And the community, the ministry and everybody else is pretty disappointed," Tipene-Leach said.

There are two major risk factors for SUDI: smoking during pregnancy, which weakens the baby's breathing, and bed-sharing, which can result in accidental suffocation either by people or blankets.

District Health Boards are tasked with providing at-risk families "safe-sleeping devices" called pēpi-pods and wahakura - small, culturally relevant bassinets which protect babies while they're sleeping in the same bed as parents.

Māori, Pasifika babies dying at higher rate

But, Tipene-Leach said, it was more complicated than solely providing the basket.

He said many of the families whose babies died actually did have safe-sleeping devices. Many of the babies had been recently ill, too.

He said the causes were complex but without doubt, it was inextricably linked with poverty, poor health and financial insecurity.

"So they were recently ill babies, in very hard-up families, who had actually heard the messages and sometimes had a safe sleep space in their house, but who are in such a difficult position that they were unable to provide a safe sleeping space on the night of the death."

Tragically, of the 52 babies suspected to have died in 2019 of SUDI, 36 were Māori, nearly 70 percent. Another nine were Pacific infants.

The rate Māori children are dying of SUDI is growing, and is nearly 11 times greater than the rate for Pākehā and Asian babies. The Pacific rate is nearly eight times greater.

Dr Tipene-Leach says this is called a "failure of policy", and the root of the problem is entrenched poverty.

"We just spent tens of billions of dollars dealing with the virus ... but what we're not going to do in this country is that we're not going to address income disparity and income inequity. If we don't address that, then what we should be doing in this country is we should be saying 'oh it's ok that 50 mostly brown, mostly poor, and often homeless babies die in New Zealand'."

He said the ministry's program had lost its way, which it realised and wanted to change.

The Ministry of Health requires District Health Boards to distribute a minimum of 8500 safe-sleeping beds - wahakura and pēpi-pods - which allow safe co-sleeping of a baby and parents.

However, DHBs have fallen short of distributing the expected 8500 devices every single year, although have come close recently.

In 12 months between July 2018 and June 2019, 5193 safe-sleep beds were distributed.

It has now ramped up to almost 8500 a year, but has not exceeded the minimum.

Change for Our Children founder Stephanie Cowan ran the first government-funded national SUDI prevention program contract from 1992 for about 20 years before the Ministry of Health took over.

"From 2009 to 2016 there was a consistent and steady fall in infant deaths and a consistent and steady rise in the access to infant portable sleep spaces. But since 2016 we're not seeing that, and the biggest thing that changed the ministry came on board and designed a whole new program, and this is what we have."

She said in their programme there was a network of people educating new parents about SUDI especially among vulnerable groups.

Cowan said it was never just about giving families the basinet.

"We had trained people who were certificated and they did it as a 20-minute conversation, but now it's whoever is the health professional attending the family, the midwife, the Plunket nurse. It's more giving one to the family, like a car seat hire - all about the product, not the programme."

'Waste of time' if safe sleep beds not going to right families

University of Auckland SUDI expert Dr Ed Mitchell said the final number of SUDI deaths for 2019 may end up being revised downwards, but at best, it had plateaued and was certainly not improving.

He said he was hopeful that this strategy of widely distributing safe sleep devices would help.

"So the questions is why hasn't it? Because the safe sleep beds are available. Are they getting to the right people? If they're not the right 10 to 15 percent [of at-risk families] then it's a waste of time.

"At the DHB level, there was a slowness in taking up this and organising a program to actually get these devices out to the people. I suspect that even though they're getting out, they're not necessarily getting out to the right people, but we haven't got the data [to know] that," Mitchell said.

"Secondly, is this strategy no longer working? One of the concerns I have is maybe we're talking so much about safe sleep that what we're doing is encouraging babies to be taken to bed with the parent, and so this is certainly not the strategy that we were hoping would happen."

The Ministry of Health is now reviewing the whole programme.

Mitchell said based on what we know so far this is "very much necessary".

The ministry is currently looking for an "independent evaluator" with experience in kaupapa Maori to look at the entire strategy.

A Ministry of Health spokesperson said the it was concerned about the figures, particularly with the inequitable rates for Māori and Pacific babies.

"This led to the ministry's recently completed review of Sudden Unexpected Death in Infancy (SUDI) liaison reports for all provisional SUDI between 1 January 2019 and 31 July 2020. The review is to help identify actions that will support immediate quality improvement to existing services, based on findings and recommendations from the SUDI expert advisory group," a statement read.

It'll also take recommendations from its Expert Advisory Group, which includes Tipene-Leach and Mitchell, as well any findings the review takes into consideration.

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