Remembering the People in the Numbers
Dead. Dead. Dead.
Wow — three dead in a row? It’s typical to review the patient files of a couple of dead babies during a data quality exercise, but three dead in a row? To make it even more jarring, two of the three infants were named Miracle. It seemed that their mothers could sense the fragility of their newborn babies and were hoping for a miracle.
As a monitoring and evaluation (M&E) officer at Elizabeth Glaser Pediatric AIDS Foundation in Malawi, I travel every quarter to rural Mchinji and Ntchisi districts to conduct data quality audits and mentorship at 15 health facilities. Essentially, this means that I go into rural clinics, look at all of their HIV-related registers and data, and assess the quality and performance of those departments.

My favorite department to review has always been the exposed-infant diagnosis (EID) department. Although Malawi’s infant mortality rate has improved considerably, it is still relatively high at 45 deaths per 1000 live births (compared to the rate of fewer than six deaths per 1000 live births in the US). All children born to an HIV-positive mother are followed for a period of two years, during which they receive HIV tests at two months, 12 months, and 24 months. These testing milestones are especially crucial because without treatment, 50 percent of children with HIV will die before their second birthday.
Each child registered in the EID department is issued a “pink card” which acts as the child’s patient file. During these quarterly reviews, I peruse tens to hundreds of pink cards, depending on the size of the facility. This can be an exhausting, overwhelming, time-consuming activity. It would be a lie to say that I have never let my eyes glaze over and simply made the necessary ticks and slashes on my reporting forms.
Unfortunately, many routine M&E activities require us to quantify very specific measures, allowing us to skim other important details such as verifying current outcomes and checking that all HIV positive children have started treatment.
During my second set of mentorship visits, just as I began to grow comfort and speed in this activity, I was reviewing the pink cards of a particularly large facility. Since we review the files from the past two years and each month at this facility has about 20 exposed children born in it, I was reviewing nearly 500 pink cards. By the middle of this mammoth task, my eyes were dry and my brain overloaded. It was on this day that I came across the three pink cards in a row marked “D” — died.

…the gravity of this situation reminded me of an important message: do not forget who you are serving. When we are restrained by time and resources, it is easy to gloss over the details of individual cases. But this instance reinvigorated my need to ensure that every single child in our care is receiving the services promised to them.
This discovery woke me up and I combed through the children’s records carefully, ensuring that we had not, in some way, failed them. Perhaps more than any other time in Malawi, the gravity of this situation reminded me of an important message: do not forget who you are serving. When we are restrained by time and resources, it is easy to gloss over the details of individual cases. But this instance reinvigorated my need to ensure that every single child in our care is receiving the services promised to them.

In the age of the 24-hour news cycle and daily tragedies, this is an important lesson for everyone. It is easy to become numb to the news of the latest bombing in Kabul, or the latest mass shooting in the US, but we cannot forget to remember the every person lost is someone’s mother, father, daughter, brother, or friend.
We must remember the people in the numbers. We must remember that every ticked box represents a human life. And every child or parent lost is a devastating heartbreak to a family — something from which some families may never recover.
In M&E it is easy to focus on the cohort or the overall “performance”, but we must remain diligent. We must remember the people in the numbers. We must remember that every ticked box represents a human life. And every child or parent lost is a devastating heartbreak to a family — something from which some families may never recover.
We must practice compassion and empathy. As the Dalai Lama said, “Love and compassion are necessities, not luxuries. Without them humanity cannot survive.”
We must be better. We must work harder.
Tyler Best is a 2016–2017 Global Health Corps fellow at the Elizabeth Glaser Pediatric AIDS Foundation in Malawi.
