A church sits in the middle of a veritable jungle- worn down, but welcoming with massive green doors propped wide open. A queue of parents and children wait patiently outside for us. Perhaps it’s my bias, but all of the parents look a little bit nervous. We are here, after all, to poke and prod their kids in the name of science.
The scientists I’m following around for the day are a part of a field team from the Neglected Tropical Disease (NTD) lab at KEMRI. They have driven close to two hours to come to this church today and will come here again in exactly one month’s time. Tomorrow they will drive to another church in another village. In fact 16 days out of the month these dudes journey around the county, going from village to village collecting data and samples. They’ve been doing this for over a year now and will continue on for another year. Super. Tedious. But it’s necessary because their study population is children under five. You can’t exactly expect kids under five to trek to the nearest medical facility once a month. And since part of the study’s goal is to determine patterns of parasitic infection, it requires checking in on these kids at many different time points over the course of multiple years. It’s a labor-intensive project, but absolutely critical.
It’s important to understand that in places like Kenya, the burden of parasitic disease falls heavily on small children. This is due in part to the life style of young children (i.e. they traipse about playing in contaminated water and eating things they shouldn’t) but also in part to the lack of immune response to such bugs. As children get older they build up a tolerance of sorts. Unfortunately this takes forever and is never good enough to prevent future infections. If children reach a certain age, however, without dying or being permanently disabled from one of these infections (morbid I know, right?) then they usually have a robust enough immune response that they actually appear asymptomatic. Many adults don’t even know when they are infected with a parasite. Because of this, many parasitic infections were thought to be unimportant and therefore have been “neglected” by the scientific and medical community for decades.
“But what about the children!!!” you may be asking. My thoughts exactly! There have been a number of public health endeavors spearheaded by WHO, executed by NGOs, and the Gates Foundation and backed by Big Pharma (I’m putting it out there in the world that this is my dream career). This has done wonders to minimize the impact of parasitic infections on young children, but they still persist. That’s why studies like these are important. This team is gathering medical information (fever, weight, hemoglobin levels, etc.), immunological samples, and behavioral information (bed net use, travel history, etc.) in addition to testing for parasitic infections in these kids. Importantly, they also provide treatment whenever a child comes up positive.
Which brings me to my day in the field and our little makeshift doctors office…
Church pews are placed on one end of the porch so parents and children can rest while they wait. The Community Health Volunteer (CHV) sits with his neighbors, casually chatting with them. I can’t speak Luo (the local language) but I get the feeling he is trying to distract them with idle talk. His tone and mannerisms suggest banter.
Two chairs are set up in the middle of the porch, one for a parent and one for a KEMRI scientist. He communicates to each parent in turn the goal of the study, explains what will occur at this visit, takes down information about the kid and obtains consent. As at the CRC, this consent is predominantly obtained using fingerprints instead of a signature due to illiteracy.
The child is then passed off to a third member of the KEMRI team who takes the kid’s weight and temperature. He is young- younger than me- and is currently getting his undergraduate degree in public health. I can’t help but be reminded of my trip to Honduras to do medical triage as a sophomore at UCLA. Except that I got to go back to California at the end. He doesn’t. This is his country and his people.
At the far end of the porch, the main scientist has a table and one of the big plastic boxes that were so common at the CRC. At this final station the parent and child are reunited and sit for a set of diagnostic tests. Each of these requires a tiny amount of blood so the KEMRI scientist has to prick the kids’ fingers with a small needle and then transfer their blood onto a microscope slide and into the cassettes of the rapid tests. It’s not painful, but it certainly is frightening for such young kids. Most of them cry or scream, both in anticipation and from the shock of the prick itself. No wonder the parents looked nervous. For the most part the dude’s demeanor- calm and encouraging yet firm- settles them down. And when that doesn’t work, we resort to baked goods. Just like the lollipops in pediatricians’ offices back home, it works like a charm.
We made it through 10 out of 11 enrolled children with a reasonable amount of screaming. Parents were provided with cupcakes, juice and medication for the kids and then everyone went on their way. It was weird to watch them all walk off in different directions, each disappearing behind a wall of foliage. After they all left, the KEMRI team and the CHV sat down to discuss the last child who had not shown up.
The thing with CHVs is that they know all the dirt. This is one of the reasons they are so invaluable. It turns out this kid’s mom has been a consistent problem for the study. He reminded the team that the last time she didn’t show up until two hours after the designated time slot. Luckily he knows where she lives and it’s not that far. So the team decides that rather than waiting for her to show up, which could very well never happen, we will go track her down. We pack up the necessary equipment and head off- on foot.
We must have looked so ridiculous wandering through the countryside. For starters, none of us were appropriately dressed for a walk through the jungle. The guys on the KEMRI team were all wearing khakis or slacks with polo shirts and I was the only person wearing any kind of appropriate footwear- converse. On top of all that, the undergrad was carrying around a scale and one guy had a big plastic tub with all the diagnostic tools. And of course there’s the small issue of being accompanied by a random white chick. Super inconspicuous, I know.
Not too shockingly, a local stopped us on our walk and demanded to know what we were doing there. There is a lot of mistrust between locals and the medical community. And while education efforts have helped counter misinformation, the tension still exists. This is another reason why it is absolutely critical to work with a CHV. They can act as a moderator, which leads to a more productive dialogue in situations like this.
Eventually the local man understood that we were there to benefit the community. His attitude towards us warmed instantly and he started shooting the shit with the KEMRI guys. [At least I assume that’s how it went down. I couldn’t understand a word of it, but I could tell by their tone, his change in demeanor and their eventual shared laughter.] At some point the conversation turned to me. There was a great deal of gesturing and nodding and then something was settled. The KEMRI dude turned to me and said he wants to show you his dinner.
I turned back to the local man who procured a rather large fish from the plastic bag he was carrying and started pointing out features on the fish while rambling in Luo. The KEMRI team explained to me that he was describing the differences between Nile tilapia and Nile perch. They also told me he had just caught this and was very proud. It would feed an entire family after all. The man started gesturing to me and for a second I feared he wanted me to touch the fish, which I super did not want to do. I guess he was just asking if I wanted to take a picture of him and his fish. His earnestness and pride were so endearing that I obviously obliged.
We continued our stroll and about ten minutes later, had to turn off the main road to continue into the actual village. Sometimes there was a path. Sometimes there wasn’t. Regardless, the CHV led us swiftly through a series of huts and small farms. We wound through the village for about 20 minutes catching the attention of a number of women washing clothing and children in school uniforms.
Eventually, we found the boy. I will call him Lincoln so as not to provide any personal information. I doubt any of you will try and track him down to leverage this story against him, but it’s good practice. Lincoln was playing in the yard of his home wearing worn out beige pants and a cardigan. His pants were too big and kept falling down and his cardigan was buttoned only at the top so that his belly stuck out. Many kids have big bellies but Lincoln’s was also slightly distended, a sign that he may be in fact be malnourished. He’s only 3 years old.
The minute he saw us, he fled into the house, pants sagging. Unfortunately his mom was nowhere to be found. We did, however, find his grandmother and only slightly older sister. At least I assume it’s his grandmother and sister. Again, no clue! After a little bit of discussion, the grandmother gave us consent to collect data other than the blood tests while we waited for one of his parents to show up. Lincoln, however, had other plans in mind.
The head KEMRI scientist started asking survey questions, while the undergrad attempted to find a level place on the dirt to set the scale. We gave Lincoln’s sister a cupcake to go went fetch Lincoln for us. I could tell the minute Lincoln came over that he was going to be problematic. Despite commands from his grandmother and bribery on our part, Lincoln just kept trying to run away. Each time she grabbed him, he yelped and whimpered. His tantrum attracted the notice of other villagers and two young teenage boys in green school uniforms came to see what was going down. They clearly knew Lincoln and didn’t seem to be troubled by his wailing. In fact they offered to help with Lincoln and were recruited to weigh him and take his temperature. One stood on the scale and was handed a squirming Lincoln to obtain a weight differential. The other attempted to gently hold Lincoln’s arm down to pin a thermometer in his armpit long enough to get a reading. Both of these activities were wildly unsuccessful and led to even more screaming. Another two villagers- young men, perhaps early twenties- came to see what the fuss was and were again unfazed by the spectacle.
Keep in mind that I have no idea what anyone is saying so I was sitting there watching this child wail uncontrollably and was therefore just a tad concerned for Lincoln. Were we hurting him? Was he scared? Why doesn’t anyone care? At a break in the attempt to get measurements, I asked these questions. Nope. Apparently the kid is just ornery and cries at everything. I guess this explains why no one seemed concerned that he was throwing a Grade A tantrum.
Eventually his father showed up and Lincoln immediately simmered down. Our relief was short lived, however, since apparently the dad had no idea that his son was even enrolled in a study in the first place! The CHV and KEMRI scientists had to seriously back peddle and explain the study that Lincoln had been participating in for the last year and half in order to obtain consent yet again. Eventually it all worked out and an hour-ish later we left the village.
We had spent so long at this kid’s home that the CHV suggested we take a shortcut. So he turned into a field of some plant that is literally two feet taller than me and we spent the next 15 minutes pretty much bushwacking through the field. I tore my pants and ended up with a few nicks on my face from rebounding plants. I also instagram storied it because why not? For me, it was an adventure!
On the drive home, we stopped for Nile perch at a restaurant, which is a literal shack on the side of the road. I asked the scientists whether this is representative of a typical day in the field. Unfortunately it is. No shows are frequent and these data points are too important to just shrug off and too expensive to try and get on another day. Scientific study reasons aside, these guys also just care. They know that their visits are the only regular access to health care and treatment that these kids are getting. A no show is a missed opportunity for a child in need.
The scientists in turn asked me how I felt about the day to which I emphatically gushed “That was awesome!” I then corrected myself because that’s fucking tone deaf. “I mean… it’s not awesome that this is the situation for those kids or that you guys have to trek 40 minutes on foot to get samples. I just mean that it’s awesome that I had the opportunity to experience this and understand what you all go through.”
You know, I’m used to getting up on my little soap box to talk about parasites and tuberculosis- stats for the public health people, crazy biology for the basic scientists. Anything to get people to listen really. And that’s not a bad thing. We all do it! But it’s just so easy for our spiels to become a bit. You start every talk the same way and it starts to just roll off your tongue without you even thinking about it. After the hundredth time you become numb to what you yourself are saying.
That’s why I can honestly say that the single day I spent in Rarieda (the sub-county we were in) was one of the most important days in my graduate education, even though I did absolutely nothing scientific. After Rarieda, I don’t think I’ll ever be numb to the spiel. Because, now, when I talk about my work I think of Lincoln. I think of this KEMRI team and the church and the plant that smacked me in the face mid instagram story. Everything I say is now grounded in real people and real experiences and that makes all the difference.