Can you share some success stories from CHAMPS sites?

Blau: One is from the Ethiopia site. Unfortunately, they have seen a dramatic, definitely more than they suspected number of stillbirths and very early neonatal deaths caused by neural-tube defects, so spina bifida or the brain not closing. The major cause of this is folate deficiency, which can be prevented by eating foods fortified with folic acid, but in Ethiopia they don’t have such fortification. This is completely preventable. In most countries, this is prevented because flour or other meal products are supplemented with folate. And so the CHAMPS data, on a daily basis, is really underscoring and highlighting for the local and national governments that this is a significant problem, a major cause of under-five mortality, and very preventable. As a result the Ethiopian government is moving forward with fortified salt in the country on a small scale.

As another example, the Gates Foundation has used CHAMPS data in three of their high priority program strategy teams to inform intervention strategies including vaccines or other preventions of death and disability. 

One other example, related to COVID: Because the CHAMPS platforms were built in some areas where there wasn’t a lot of surveillance or public health activities similar to CHAMPS, when the pandemic hit in these areas, our teams at the site were easily transitioned over to help with COVID response. This includes the labs that were set up and were primed to take on COVID testing.

Bassey: In the northern province of Sierra Leone, prior to CHAMPS, clinicians at the Makeni Regional Hospital did not have access to blood culture and sensitivity testing to be able to offer high quality diagnosis and treatment to children. With the advent of CHAMPS, laboratory staff capacity has been built and they started bacteriology services. Blood culture and sensitivity testing are now available for children admitted to the Neonatal Intensive Care Unit and suspected to have sepsis.

CHAMPS has enabled documentation and recognition of the high rates of under-five mortality and stillbirth at the hospital. Because this had not been correctly identified previously, people are shocked at the numbers and are now beginning to pay more serious attention to the issues. Families really appreciating getting the feedback following the panel review, leading to an increase in demand for improved care at all health facilities.

Numerous personal stories from families who have received their post-mortem results reflect that people feel relief in knowing the cause of death and, in some cases, have family relationships restored. CHAMPS also provided accommodation for the facility to have two medical officers, providing better coverage for maternity and pediatric wards, especially at night.

How do consent and community engagement play a key role in your work?

Blau: Before this work I did not have a full appreciation of social behavioral scientists. None of the work in any of the sites could have happened without that strong social behavioral science which includes community engagement and outreach and just understanding the community. Because each community is different about how they look at death, how they look at child death, how they look at stillbirths, how they look at pregnancy. Each of the teams at each of these sites did a lot of work prior to even thinking about implementing CHAMPS to see the feasibility or to see what approach should be taken so that the concerns of the community are addressed. Not just to begin with, but always having ears to the ground. Rumor surveillance. At any point, things can change and so making sure that they are addressing the needs and questions of the community is important.

Bassey: Community engagement is key to consent as here in Sierra Leone consent is not a private issue for just the parents. It often involves extended family and even neighbors or influential friends and leaders. So having widespread knowledge is essential. Community also includes the health facilities and educational centers, so we are intentional in reaching out – both from the social & behavioral sciences and mortality surveillance teams.

What motivates you every day?

Blau: At each of our sites we have a huge amount of people who you can tell their passion is trying to help their communities, trying to help families save a life or make a life better. Even if we don’t make a big difference on a daily basis, CHAMPS is making a significant difference. The teams at each of the sites are very caring and dedicated to the CHAMPS mission. The families they approach are in the darkest part of their lives, they never would imagine losing a child and here they are talking to a group of people and agreeing to something that they never thought of before. When I stress that the teams at the sites are just amazing, it’s because they go and talk to these families on a daily basis and it’s just heart-wrenching to hear these stories. The most important part is going back to the family and giving them closure but also reassuring them and the community. When they go back to their family and the family thanks them profusely because now they know for the next child if there is something that they can do differently. It helps with the education and the families are very thankful about moving forward.

Bassey: The hope that someday children, who represent the future of the country, will no longer die needlessly because people not only understand better but are empowered to do what is needed for the wellbeing of children under five.

What kind of legacy do you want CHAMPS to leave behind?

Blau: That CHAMPS made a significant contribution to better understanding the causes of death in areas where the child mortality rate remains high.  Also and more importantly that CHAMPS informed and played an important role in decreasing the mortality rate as well as overall improving child and maternal health.

Bassey: For CHAMPS to be known as the project that brought people together to understand what causes child/stillbirth death so that people can form coalitions to work together to address issues and reduce mortality rates. CHAMPS is bringing collaboration to a new level as we address multifactorial issues and try to engage rather than point fingers. The results we are seeing are quite groundbreaking and challenges current thinking. We look forward to continuing this and looking for opportunities to collaborate with more groups and other government departments outside of the traditional partners within the Ministry of Health and Sanitation.

Did the pandemic impact CHAMPS activities?

Blau: It did. Some of our sites had to suspend enrollment either due to local or institutional restrictions because a lot of CHAMPS relies on being out in the community. If a local community or the country implemented travel or movement restrictions within a community, that had a huge impact. So we did have three sites that suspended enrollment for the tissue-sampling  procedure. Had those continued as planned it might have had a real effect on reducing under-five mortality. Another issue that had a negative impact on the testing involved reagents going into the countries as well as some of the tissue specimens being sent to CDC in Atlanta for specialized testing. The worldwide shipping issues that everyone knows of, a lot of the shipping we use, goes through commercial flights – hen flights were being canceled and being restricted, that slowed down all the testing and determining the cause of death.

Bassey: In Sierra Leone, sample collection and testing was put on hold effective April 4, 2020, due to the pandemic. We put all active surveillance on hold through December 1, . Active surveillance involves daily, multiple visits to healthcare facilities (maternity, pediatrics wards, mortuaries etc) as well as communities, looking for death notifications. The mortality surveillance team was re-assigned to work with the Ministry of Health and Sanitation 100% on COVID surveillance. Instead the team only received phone notifications and contacted families by phone to do preliminary screening.

The CHAMPS lab also pivoted to COVID-19 testing during the period. Although reporting of child death cases seem to have declined, surveillance activities continue to be strengthened with high community engagement, frequent presence in the facilities and radio announcements.

Several of our laboratory reagents and consumables expired during the pandemic and the usual supply chains were adversely affected by travel restrictions. The laboratory space for the testing of CHAMPS specimens, which was shared with the Ministry of Health and Sanitation, was converted to COVID-19 regional testing site. 

Also, shipment of samples to the Central Pathology Laboratory at the CDC in Atlanta suffered delays due to COVID-19 related travel restrictions and closure of the Sierra Leone airport.