Just finished my first week in South Africa, and my first week of clinical mentoring.
Initially had some computer trouble, and wrote like 10 pages in my journal about how I felt the first couple of days…I will spare you all the details. But basically, I was alternatingly excited and nervous about being here. As I watched the “moving map” on the plane, I got more and more nervous as I saw us approaching Johannesburg. Who was I to be doing this? I am a resident, practically the lowest on the totem pole. And I am here to teach?! Humbling…
So I arrive in Jo-burg on Saturday night. A nice man named Hetmen picked me up from the airport and took me to Pretoria. We chatted on our way to Pretoria. I was struck as we talked at how clearly non-American he was (bear with me, I don’t expect people in other countries to be “American.” In my head I was just comparing things). It wasn’t just his accent, but also the way he carried himself. There was a bit more joy in him than I see in America, generally…And I think also a bit less anxiety. He dropped me at the hotel I was staying in for the night, and said “and now you are home.” I found that so comforting. At first I thought it was just his English translation (but nonetheless found it endearing), but I have subsequently realized that that is a common expression here. Somehow makes things feel more hospitable. And the actions to back up this piece of warm fuzzy dialog. When I arrived at the hotel, the clerk made me a pot of tea before I could even check in, and my experience with service and hospitality has been the same since.
On Monday, Vivian (a woman who is here working for the program for a year), Rolando (a UCSD pediatrician/infectious disease specialist whose last week was my first week) and I drove to Nelspruit, about 4 hours due east from Pretoria, in the Mpumalanga province. Vivian soon returned to Pretoria, so she could fly to England for her vaca.
Rolando and I spent the week working in a clinic called the ACTS clinic. It is a faith-based clinic, whose vision is: “to provide quality care & support to all those infected & affected by HIV/AIDS & to model this in the Masoyi Tribal Area.” Our main contact at this clinic was a man named Ian Proudfoot (not native American, in case you were wondering, because I did). He is a lovely, welcoming, gentle, and inspiring physician. His training was in “general practice” and he had spent all his life and the first 20 years of his practice in Cape Town, in the private sector (essentially rich people). About 2 years ago, did some soul searching, decided he needed to address the AIDS crisis in his country, moved across the country and joined this public clinic. He had never done AIDS/HIV work before, and had rarely seen children. He also didn’t speak Swa-Zulu which is the predominant language in this region. He has proved to be a quick learner of all of the above, and his enthusiasm is inspiring.
The clinic was great. They took what used to be a tobacco farm, solicited funds (partly from Swedish churches, some from PEPFAR – the US government funding of African HIV work), and basically rose from the ashes. An old shipping container was recycled into an on-site lab. Timber buildings with corregated tin roofs house the clinics, a 12 bed inpatient facility, and a counseling center. They have an on-site pharmacy to dispense patients meds, as most patients are too poor to buy meds on the outside. And I can see, they are SAVING LIVES. Just a year or 2 ago, all of their patients would be knocking on death’s door. Despite that, I am struck how many resources we waste in the US, and how we take for granted the billions of tests we order with the click of a button. The providers here didn’t have access to a CT scanner with the exception of a hospital about an hour away. And even then, as I was told “one CT scan would blow our testing budget for the entire year.” So something we order without even thinking in the US is a COMPLETE luxury. And they make do with very basic labs and chest Xrays, and a limited supply of meds.
The children here are so stoic. I was looking at a tiny 8 year old’s anti-retrovirals. They were HUGE. Like, I would have trouble swallowing them. And that was just one pill of three, and she has to take 2 tabs twice a day. I asked her mother how she gave the pills, assuming that she crushed them in food or something. The mom looked at me, surprised, and said “well, she swallows them with water.” The children don’t complain, their parents are not thrown into anxiety about their symptoms. One boy I saw had a rash all over his chest and back. We decided it was either fungal or a complication of his HIV. In the US, he would have along the way been labeled as an “allergy to amoxicillin” (which all the kids here get at some point for their frequent pneumonias due to compromised immune systems). Here, nobody seems to be allergic to amoxicillin. In the US, it is all over the place – “rash” “GI upset,” etc. There, amoxicillin is almost the only antibiotic you can receive for pneumonia, not taking it can result in death at worst, lung damage at best, in many cases, lungs that have already had HIV complications and/or tuberculosis.
I don’t mean to bag on the US. I hope to be a parent some day, and know (esp with my medical knowledge), that I will freak out about every symptom my child has and probably make their doctors nuts. But my point is just that abundant resources allow us to be more picky, more demanding, and more whiny (myself included). I was struck this week how many of the children we saw were AIDS orphans. They were being raised by grandparents, older siblings, or themselves. You hear the statistics, and then you hear a 9 year old recite his own meds because there is nobody to be responsible for the meds except him. I was struck by the number of children who were “failure to thrive” – in other words malnourished. Their HIV is treated, they are screened for TB, treated for worms, and asked about their symtoms. If no obvious cause is then found, the children are watched, sometimes given a fortification powder. In the US, we admit these children to hospitals. I suspect, based on the town I subsequently drove through, more of these children don’t have enough to eat than their caretakers are willing to admit. In addition to there being extreme poverty, a child’s metabolism increases by 30% when they have HIV.
One story stands out to me this week. We saw a 22 month old girl who has HIV. She is the size of a 6 month old (6kg), and has the development of about the same (can only sit up, makes no cooing or babbling noises, poor social contact). Her mother is mentally retarded, and the social situation is complicated. It is unclear whether the child is receiving her antiretrovirals, and how well she is being fed. In addition, on exam, we are suspecting she has some other genetic problems. We talked later with the social worker about her. The social worker expressed her extreme concern about the child’s development. She stated that some members of the clinic wanted to take the child off ARVs and “let her die.” She felt they should do a big effort at advocacy for the child before resorting to this. I was struck by this. The whole situation is heartbreaking, however you look at it. And I guess you can look at “letting her die” in 2 ways. You can see it as compassionate, in a child who will likely not survive much longer, or you can see it as a tragedy in a setting where resources are limited. I am not sure where I stand. In the US, I would like to be able to work her up a bit more and try her in a different social situation (we are doing a bit more work-up here, but it is limited – there is no “organic acid” panel we can get). But after that, I think “letting her die” may be the most compassionate thing. In the US, she would get a G-tube, tube feeds, seizure meds, and would be in and out of the hospital all the time…Is this better? Isn’t it a bit of torture to continue to force medical procedures on a child who will never understand their benefit?
I was also struck by the story of a woman in their “inpatient” unit who had died of coughing up blood, while she had TB, and a superimposed pneumonia. All I could think of was imagining in the US her being whisked off to IR, to get her lung embolized…Here, they handed her a bucket as she coughed, and held her as she died. Would the ultimate outcome have been the same in the US? After an invasive procedure? Is it better to die in the arms of someone or on a cold operating table?
But I have been shocked at the ability of people in the US to rally after what should have been a life ending complication of disease. And they have more time, if even a month or so, to hold and be held in the arms of people they love. So I don’t think everything we do is futile, some of it is definitely life saving, and life-quality saving.
These are just questions I am wrestling with