The Strength of Advocacy

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Reiko Sakai, ’16 (right)

My second week in Kampala has brought with it a drastic change in perspective. Like clockwork, just as everyone said it would, my culture shock has started to fade and I am starting to become desensitized to the chaos of the commute to Mulago. Not completely numb, but increasingly desensitized. And with less energy being drained by culture shock and jet lag, I have had more energy and time to fully engage. It’s like the tunnel vision of survival mode has subsided and given way to a clearer head space and ability to process the experience, including some beautiful, as well as some really difficult, lessons.

One of the turning points was making a friend, which is one of those milestones that can happen in an instant but can change everything. I had finally started to distinguish the different levels of Makerere students rotating on pediatrics (medical school is five years for them, so the fifth year students are my counterparts), and found myself working with one of these students, Clare, to “clerk” (meaning to follow, or take ownership of, as a student) the same patient. This patient, a newborn, turned out to have a very rare condition called osteogenesis imperfecta, which is a genetic disorder leading to very weak bones. I had never seen a case of it, and wouldn’t have been surprised if I never saw one in my entire career in pediatrics, but it turns out that it is mysteriously common here. One resident told me this was the fourth case she’d seen in the past year at Mulago. One of the heartbreaking things about osteogenesis imperfecta, or at least the form of it we suspected our patient had, is that it leads to multiple spontaneous fractures even with gentle handling, leaving infants in terrible pain. Seeing how much pain our patient was in, I was dismayed to find out that morphine is not used in neonates here; ostensibly, this is due to the inability to closely monitor for the dangerous side effect of respiratory depression, given that the primary health care providers are family members (nursing is incredibly short-staffed) and there are no vital sign monitors on most of the wards. Less potent analgesics like Tylenol or Ibuprofen are used instead, but I worried this would not be enough control the baby’s pain.

I soon learned, however, that this difference in approach did not represent a lack of compassion or dedication in the healthcare team, and, through my new friend, I also learned what it really meant to “clerk” a patient. After obtaining approval from a resident, she and I wrote the order for the lower limb x-rays to confirm the suspected fractures. We then convinced our patient’s mother, who was distraught and exhausted from spending day and night on a straw mat on the cement floor to care for her sick baby, to take her to wait in the interminable lines in radiology. She would then pay out-of-pocket for the procedure. We showed this image to another resident who confirmed our reading, agreed with our recommendation to adjust the pain management regimen (switching from Tylenol to Advil, which would add anti-inflammatory properties), and personally called an orthopedist to see if any surgical intervention could help the child. In the meantime, we were tasked with drawing blood for laboratory studies, something neither she nor I had ever done to an infant, so we commissioned one of our more experienced colleagues to do so. We hand-delivered these blood samples to the lab in a separate building about a ten-minute walk through campus. This was all for our one shared patient. Clare was already clerking two others, and there were about forty more on our ward all being cared for primarily by their parents, plus two to three nurses, one intern, a few students and residents who are primarily there in the mornings, and one consulting (attending) pediatrician who generally is present for morning rounds only. With the intern just trying to keep her head above water, and the residents covering not only our ward but several others, students here are true advocates for their patients. If they don’t take initiative to make sure their patient gets the testing and/or treatment they need, it likely won’t happen, not for lack of anyone who cares, but for lack of resources – material, financial, and human.

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Another example of this advocacy taught me how incredibly difficult it is to be the parent of a sick child here. One day, I was walking to lunch with Clare (my first time not eating by myself since Ian had switched from Mulago to St. Stephens Hospital!), when she introduced me to her friend Sonia, another fifth-year med student. She told us she was on her way to withdraw money from the ATM for the father of a patient whom she and a resident had tried to resuscitate, unfortunately without success. Apparently, the patient had very high potassium levels, which is dangerous because it can cause cardiac arrhythmia, and the father had been told to run to the nearest pharmacy to buy a crucial medicine that was not readily available in the hospital, which would cost him the very last of his money. By the time he returned, the child had died. Not only was he faced with this terrible loss, but he now also had no money for transportation to return with his deceased child to his village outside Kampala. Sonia recounted this story in a very matter of fact way, and Clare nodded with a knowing expression (she had probably already experienced a similar situation), and we agreed that we would catch up the money was withdrawn. My heart broke for this father, and I was filled with respect for the student. I have continued to get to know Sonia, and since we are not in the same firm, as groups of seven to eight students rotating on the same ward together and we are not working together, most of our interactions are lighthearted and full of joking. I often find her to be refreshingly irreverent. But I will always remember how she struck me as almost saint-like in that first interaction.

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