Understanding the complex causes of SUDI

10/03/2021

History of SUDI rates in New Zealand

New Zealand’s rates of sudden unexpected deaths in infancy (SUDI) fell steadily from the late 1980s for several decades. Much of the credit for this reduction was due to implementation of new interventions and education based on research done right here in New Zealand.

Cure Kids is proud to have invested in many of these studies over the past 20 years. In 2001, Professor Ed Mitchell became Cure Kids’ Professorial Chair at the University of Auckland. From this platform, he was able to build a team to study the many complex causes of SUDI, known at the time as “cot death” or “SIDS”. His team developed an algorithm to calculate risk which informed major public health campaigns over the next few decades.

Since Cure Kids began its ongoing investment in Prof Mitchell’s research, sudden infant deaths have fallen from 2.1 deaths per 1000 to 0.77 deaths per 1000. However, more recently, numbers have plateaued. In 2017, the National-led Government launched a national prevention campaign, and set a target of reducing the SUDI rate from 0.7 per cent per 1000 live births to 0.1 per cent by 2025. Now, just-released data show that fatalities actually rose in 2019.

New Zealand has one of the highest SUDI rates in the developed world. The rate of SUDI in Māori children are extremely high – both relative to Pākehā babies in New Zealand, but also compared with rates in diverse ethnic groups around the world. Rates of death for Pasifika babies are also disproportionately high.

The causes of SUDI are complex. Research has shown that risk factors include smoking during pregnancy and bed-sharing with babies, but deprivation, poverty, and other health conditions also increase the risk.

Latest research underway, funded by Cure Kids

Prof Mitchell and his colleagues have continued their work to understand SUDI, and to develop a range of options for prevention. Last year, he applied for another project grant from Cure Kids to review all SUDI cases over 10 years (2006 – 2015) in relation to anonymised information about whether the families accessed services from a range of government agencies. Statistical modelling will be used to identify trends and associations, and to discover any previously unknown risk factors. The insights should help to tailor the way in which information and support is provided to families.

Professor Mitchell’s earlier research has also led to the development of a Safe Sleep Calculator – an online tool which can identify babies who are most vulnerable. Since 2015, with the support of Perpetual Guardian, Cure Kids funded Dr Christine McIntosh to integrate the Safe Sleep Calculator into a tool called Survive and Thrive 2025.

Survive and Thrive 2025 is a programme at Counties Manukau Health, which aims to identify babies who are most vulnerable and provide wrap-around support to protect them.

This year, with support from the Karitane Product Society, Cure Kids is funding Dr Christine McIntosh to implement the Survive and Thrive ‘bundle of care’ alongside Best Start Kōwae, a set of web-tools which support assessment in primary care during pregnancy and postnatal checks. Best Start Kōwae will support healthcare professionals like GPs, nurses, and midwives to make on-the-spot decisions for babies and whanau, based on the most up-to-date guidelines and recommendations.

Prof Mitchell says that these studies should also deliver new information on infant care by families in Counties Manukau, where a large number of 2019’s deaths were recorded. The data should help to show whether measures like safe-sleeping devices and evidence-based advice are being targeted to the families with the highest risk for SUDI.

Need for more timely data, coroners’ reports

Prof Mitchell also identifies an urgent need to improve the timeliness of national data on SUDI. Official coroners’ reports on these complex cases are currently being issued more than a year after the deaths. This delay means that healthcare professionals don’t have up-to-date information on the success of prevention measures, which could enable timely changes in the way these programmes are delivered.

For example, we don’t yet have any information on how New Zealand’s COVID response has affected the rate of SUDI, and whether programmes should be adapted to respond to this. Prof Mitchell is working with infant pathologists to establish a national Mortality Review Committee, to supplement the important work of Coroners for suspected cases of SUDI.

Cure Kids ongoing commitment

“Cure Kids has invested in research to reduce Sudden Unexpected Deaths in Infancy over the past 25 years. We will continue to do our part to fund research to deliver the evidence-based information, tools, and policies which healthcare workers and families need to keep babies safe and prevent these deaths,” says Frances Benge, Cure Kids CEO.