How autopsies can save children’s lives

In an age in which data are more plentiful and accessible than ever before, we are accustomed to basing our decisions on as much evidence as we can gather. The more important the decision, the keener we are to ensure that our research is thorough and our information is accurate.

And yet, when it comes to what is arguably one of the most important decisions we face today, we have very little data. As part of the Sustainable Development Goals, adopted by the United Nations last September, the international community has pledged to end preventable deaths of children under the age of five by 2030. And yet, in the regions with the highest mortality rates, we lack the most basic information about why children die. We know that infectious diseases cause the most deaths, but we do not know which ones. When it comes to deciding how best to allocate our resources, we are effectively flying blind.

Since 1990, we have halved child mortality worldwide; but nearly six million children under the age of five still die from preventable causes. Four out of five child deaths occur in Sub-Saharan Africa or South Asia, regions where there are few doctors and even fewer pathologists. Standard medical investigations of the causes of death are rare. In many cases, there is no official death record at all.

When the cause of death is investigated, it is almost exclusively through a “verbal autopsy.” Parents are asked, typically three months after their loss, about the circumstances surrounding their child’s death. But while they may be able to report that their baby suffered from rapid breathing or diarrhea, they have no way of identifying the cause of these symptoms.

The problem is aggravated when it comes to the nearly 45% of deaths that occur during the first month of life. In these cases, the cause of death is often recorded simply as a “neonatal death,” a label that provides no hint as to what caused the illness. This information is useless and cannot help prevent other families from suffering the same tragedy.

Experience from successful health campaigns, such as eradicating polio or controlling Ebola, shows that while early progress can be achieved relatively easily, lasting results require enormous efforts and very accurate surveillance data. It is to collect this crucial information that the Child Health and Mortality Prevention Surveillance – or CHAMPS – program has been launched.

The CHAMPS program – a long-term initiative led by the Emory Global Health Institute, with partners including the International Association of National Public Health Institutes, US Centers for Disease Control and Prevention, and the Task Force for Global Health – eventually will involve some 20 sites in areas with the highest child mortality rates. This will allow us to record causes of death more accurately and track progress as vaccination campaigns and other measures are introduced.

These sites will rely on a new technique that allows tiny samples of key organs, such as the liver or lungs, to be extracted with a needle, causing minimal damage to the body of a deceased child. The samples will then be sent for analysis to strengthened local labs and reference centers to provide a more accurate and complete picture of all causes of death.

There are many possible interventions – such as providing folic acid to prevent birth defects, introducing new vaccines, or treating infections earlier – that we know could have an impact on child mortality. CHAMPS will provide the information needed to prioritize these measures.

Furthermore, each site will help build the capacity of partner countries’ public health systems, providing valuable data and technical support that will have an impact far beyond helping to reduce child mortality. For example, the surveillance centers will generate the data needed to tackle infectious diseases, provide early warning of epidemics, and generally improve global health.

The CHAMPS initiative is still in its early days. The sites – six of which are being funded by the Bill & Melinda Gates Foundation through an initial $73 million grant for the first three years – are just being established. More partners and more funding will be needed to expand the network and maintain it over the long term. And it will take time for the benefits to become clear.

But early results are encouraging. Worries that parents would be reluctant to allow postmortem tests on their children have proved unfounded. On the contrary, our experience so far shows that parents are very interested in finding out what killed their children. At a well-established pilot site in Soweto, South Africa, both mothers and fathers are returning to learn the results of the testing – an unprecedented level of interest.

I believe that CHAMPS’ work may have the greatest impact of anything in which I have been involved in my 20 years in public health. By accurately tracking the causes of child mortality, we can target treatments more precisely and usher in a new era – one in which preventable child deaths really will be a thing of the past.