The verbal autopsy was first used as a surveillance tool over 450 years ago. In 1665, “health searchers” scoured London, England, documenting people who died from the bubonic plague. Their reports were published in weekly “Bills of Mortality,” which people bought for a penny on the street. Their diagnoses weren’t medically accurate, with causes of death ranging from “stopping of the stomach,” to “grief,” to “griping of the guts.” Although, who could blame them? The microscope was just 75 years old and the science of bacteriology was still 200 years into the future.
Today, health researchers still rely on verbal autopsies – albeit, with much-improved protocols. They have played a role in slashing the global rate of childhood mortality by over 50 percent between 1990 and 2015 (from 90 to 43 deaths per 1000 live births). But those final 43 deaths are the hardest cases to crack and researchers will need more than just their unassisted powers of observation.
“Verbal autopsies work when the cause of death was a child hit by a truck or bit by a snake,” says Dr. Scott Dowell, deputy director of surveillance and epidemiology for the Bill & Melinda Gates Foundation. “But for specific infectious diseases, they’re terrible. There’s no way a mother can tell you if her child died from pneumococcus or respiratory syncytial virus (RSV). Both have symptoms of coughing and fever. How can we make a case for that work if we can’t measure the number of RSV deaths?”
That dilemma is the focus of Child Health and Mortality Prevention Surveillance (CHAMPS), a project that digs deeper than verbal autopsies. Researchers use Minimally Invasive Tissue Sampling (MITS) to extract tiny biopsies from the organs of deceased children. The project, supported with a $75 million grant from the Gates Foundation, aims to diagnose cause of death at a microscopic level.
“For us to make the next leap, in terms of deciding what interventions need to be prioritized,” says Dr. Shabir Madhi, director of CHAMPS’s South African site, “we need to know: Why is it, in 2016, we still have five million children dying? What are the causes? Which are the bacteria? Which are the viruses? It might well be that it’s not bacteria or viruses. It might be something else that we haven’t looked at.”
In 2015, the project ran a pilot study in Soweto, South Africa, an economically impoverished township located adjacent Johannesburg. Children in Soweto suffer from high rates of childhood mortality, malnutrition, and disease.
But it’s a delicate thing to ask bereaved parents for tissue samples from their deceased children. Knowing the need to tread lightly, the CHAMPS team sent a social behavioral science team into Soweto to engage with community leaders at the start of the study.
“People are more than just patients,” says Nelly Martube, the team’s social science lead. “Medical professionals should see them as social and cultural beings. Soweto is a melting pot with many different cultural practices and we needed to understand their burial practices so we could understand how not to disturb them.”
More diplomacy was needed for establishing a study site at Chris Hani Baragwanath Academic Hospital, where 75 percent of Soweto’s 28,000 babies are born every year. Because CHAMPS researchers needed to act quickly when a death occurred, it was given access to the pediatric ward.
“Initially, I was a bit scared,” says Dr. Sthembile Velaphi, the hospital’s head of pediatrics. “People were going to come into our department and say: What is that? What is happening? This baby died – what was the cause of death? When bad things are happening, you don’t want the whole world to know. But on the other hand, you say, ‘If we know the causes, why can we not prevent it? Are there other things we might be missing?’ No health worker, not a nurse or a doctor, can sit and be comfortable when a child is dying.”
Hosting CHAMPS proved to be an asset to the hospital. First, it added a new layer of patient service by providing grief counseling to grieving parents, whether or not they participated in the program.
“There’s no pain like that one, losing a baby,” says Keabetswe Ellen Mpiti, a parent who gave CHAMPS permission to take MITS from her baby in 2015. “They prayed with us and they counseled us before talking about everything in the investigation. It was so healing. It was a blessing.”
If the project team thought parents would be reticent to participate, they were pleasantly surprised. Of 233 eligible cases screened in Soweto, the parents in 153 cases agreed to allow MITS. The surveillance project has since expanded into six countries (Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa) and now has a 76.8 percent acceptance rate (736 MITS cases out of 958 deaths).
“It’s critical and it is important to know the exact cause of your baby’s death,” says Mpiti. “In other ways, I think the investigation can help other kids and babies at the hospitals. And then the doctors also know.”
After MITS are taken, the samples are sent for analysis to the local laboratory and the Center for Disease Control and Prevention in Atlanta, Georgia. Pathologists at both locations compare their results, then the diagnosis is examined by a “Cause of Death Panel” comprised of CHAMPS researchers and hospital managers. They pair each case with the deceased baby’s medical file, comparing the registered cause of death with the biological reality. The process is enlightening, and humbling.
In one case, they learned that a baby treated for gastroenteritis had had pneumonia. In another, three mothers delivering stillborns had undiagnosed Group B Strep – a condition that can be fatal to a fetus.
Each case sparks a discussion among the medical staff and research team about what they could do better.
“These meetings open their eyes to the responsibility of making sure they make an accurate diagnosis,” says Richard Chawana, the MITS team lead. “A lot of children in Soweto are malnourished, which can mask diseases like pneumonia. Culturally, they are learning to think more widely and to be more effective at managing their cases.”
“Hospitals have an increased sensitivity about hospital-acquired infections neonatal deaths,” adds Dr. Madhi. “The CDC is developing a package of interventions to mitigate against the risk of hospital infections.”
For what began as a data-focused surveillance project, CHAMPS has resulted in strong relationships between patients, researchers, and hospital staffs. The surprising result has been that, by bringing to light the exact causes of death, many grieving parents have developed confidence in the medical system and believe it’s worth trying to have a baby again.