Our first night at FAME was a quiet one. Having just arrived to the country, the residents were surely exhausted and were all in bed well before 9 pm. Whitley and Meredith are staying in one of the other three volunteer houses – Dr. Duane’s house to be exact – and so I’m not certain as to exactly when they went to bed, but I suspect it was very much later than the residents. I had hope to stay awake and get work done, but found myself fading fast as well and made it to no later than 9:30, though decided to get up well before dawn to take care of unfinished work. Even though we were scheduled for orientation in the morning, I was sure that it was likely to be a bit of a crazy start to our clinic as is most often the case. As it turned out, they had a young boy die of rabies the night before we arrived (more on this shortly) as well as a young six-year-old girl that very likely has an untreatable brainstem tumor and came in the end of last week – the latter case one that they were waiting for us to arrive for our assessment. And even then, we were messaged on our drive here regarding a young man with epilepsy and non-epileptic events who was possibly having some side effects from his medications. Such is life in the fast lane here in Africa.
Despite my planned early awakening, it had been a good night with a lovely and quite soothing downpour that came shortly after getting into bed and lasted for only fifteen minutes or so. These are very common here and tend to clear the air with little in the way of suffering the following morning from any mud as the rains are far too short to produce anything concerning. During the rainier seasons, though, when it may rain through the entire night, the roads the following morning are like a slip and slide making both driving and walking difficult. The deep red clay here will cake to your shoes until your feet each feel like they are encased in cement. This morning, though, it was incredibly clear with a slight chill to the air and simply gorgeous for everyone’s very first walk to clinic, which was on the earlier side as there would be an education session this morning. It was led by Amanda Williams, an OB/Gyn from California, who has come to FAME in the past to volunteer. Her talk was on the cardiovascular complications of pregnancy and was quite interesting throughout. It was held using a synchronous two-way Zoom session and the quality was very good despite the bandwidth over here and the fact that we were just a mere 11 time zones around the world.
We had set aside the morning for the residents, as well as Meredith and Whitley to each undergo a training session on the EMR (electronic medical record) and clinic in general, so patients weren’t scheduled until noontime and, even at that, there were only a few patients who had been scheduled for us to see this day. Best laid plans, though, is one of my mantras (the other, by the way, is “no good deed goes unpunished”) and no matter how hard you seem to plan on things happening a certain way, they never seem to cooperate. During morning report, it became clear that there were several patients in the inpatient ward that needed our assistance which included the young girl with the likely brain tumor as she desperately needed our assessment from the standpoint of prognosis so the family could make some decisions about care. In a six-year-old girl, this was not necessarily going to be an easy task.
My schedule was also a bit of a work in progress as FAME is currently undergoing work on creating its five-year strategic plan and as a Board member, I had hoped to attend as many of these meetings as possible during my time here. We have a consultant here for several months who is directing this process which essentially means working with all of our Tanzanian staff to create this framework. FAME is run by an all-Tanzanian staff, many of whom have been with us for years, and it is they who are the best situated to determine exactly where FAME should be headed and what is necessary for the Karatu community health going forward. The meeting this morning was an intense two-hour session that focused on further developing our surgery program at FAME and I was so glad that I attended the meeting as I was so incredibly impressed with the work that was done. Having not been a part of this process when the last five-year plan was created, it was incredible to see in person and reminded me of just how lucky I am to be a part of this organization, let alone able to contribute. During this visit, I’ll be wearing two hats – one supervising the neurology team in caring for our patients and continuing to educate the Tanzanian staff while the other is as a Board member and trying to take in as much as possible as to the inner workings of FAME and to ensure that we continue with our mission and vision.
So, while attended my meeting, our team was prepped on how to use the EMR, which by the way had been rolled out just as the pandemic was gaining steam worldwide, impacting medical care everywhere. We had used paper charts here for some many years, but the need to go to a basic EMR that would allow data extraction was clearly necessary considering the growth of FAME and the 30,000 patients that we see every year. Unfortunately, to have access to the EMR, there was a definite need for WiFi where we were seeing patients which was just outside the main clinic under an overhanging roof. Though it’s an idea place for us to see patients as it’s outside and lovely, the thick brick walls of the building are not overly conducive for the WiFi signal to get to us. Despite this, we were able to carry on by shifting some of our tables and stations and everyone was eventually seen with their charts completed.
The heart of our neurology clinic here, and what allows us to complete our necessary work, are our two social workers, Kitashu and Angel. It is there role to survey the communities and make the announcements of our clinic in advance of our arrival and it is they who create the patient flow for the clinic. Every patient we see here comes from a community that has diverse needs and though it is certainly necessary for us to evaluate the patients, without having them to assess the social needs of the patients along the way, it would be a work in frustration. Patients need services and assistance very often, and it is they who work tirelessly in the background to make things happen. Angel has worked with me for many years here and is the lead social worker, but she wears many hats at FAME. Kitashu, who has been with us for the last four or so years, is someone very connected to the Maasai community of the Ngorongoro Conservation Area (NCA) where he is from. When it comes to how things get done in the NCA, he is the most knowledgeable by far.
As I had mentioned earlier, a young boy of 12 had been brought to FAME the night before we arrived and who had died almost immediately after his arrival of rabies as he was symptomatic when he came. There were several other boys in the NCA who had also been bitten by the same rabid dog, but were not yet symptomatic, at least by report, and needed to receive the rabies vaccine and/or immunoglobulin. Arrangements had been made to bring the boys to FAME to receive treatment, but when the transport arrived this morning, there were only two boys and the report was that there were two others who had missed the ride and were still in the NCA. The two boys who made it both received the immunoglobulin immediately and will be receiving further therapy, but it was clear that some action needed to be taken to find the other two boys in the NCA and to bring them back for treatment. Given Kitashu’s knowledge of the NCA and his familiarity with everyone there, he ended up organizing a party to go in search of the other children and brought one of the other volunteers, Shama, who is an infectious disease specialist and epidemiologist, with him. Though it would be a loss for us not to have Kitashu with us for the day, clinic was light and we would make do considering the importance of the other mission.
The group spent the afternoon in the NCA trying to track down the two other boys, but they had turned out to have moved further away from where they were supposed to have been and there wasn’t enough time to get to them until the following day. But, as chance would have it, they ran across two other boys who had been bitten by a completely different, and most likely, rabid dog and were in definite need of treatment. So, the group came back to FAME in the early evening, as one must do from the NCA, with the two new boys and brought them back for treatment here where they were admitted into the ward. The reason one must leave the NCA by dark is that the gate closes there at 6:30 pm and if you’re stuck behind it, you’re either going to spend the night in your vehicle or find an expensive lodge to sleep in. Thankfully, they required neither, though I imagine they could have made it back to Kitashu’s boma and slept there. I should also put into perspective just what the challenge of their mission was, and will be tomorrow, in search of these young boys. The NCA is a completely undeveloped and incredibly vast swath of land that is nearly equal to the entire Serengeti National Park and contains the famous Ngorongoro Crater which is perhaps one of premier spots for game viewing in the entire world. Trying to find these boys could be like looking for a needle in a haystack, but with the help of Kitashu, their odds will be greatly increased and it truly a matter of life and death for the two boys with their friend having died several days ago.
Our clinic, though seemingly insignificant considering the search for these children exposed to rabies, went smoothly and was thankfully small given that everyone was just getting use to the system here. Knowing what medications we have at FAME as well as the other protocols does take some getting used to as it is far different than in the US mostly in regard to what is available to us. We were finally free to see the young child with the likely brain tumor at the end of the day, though I should reassure everyone that there was absolutely no issue of our weighing in on treatment as she had been receiving antibiotics for the possibility of an infection since admission despite the fact that it was very unlikely. We decided to go back over to radiology and look at her CT scan once again and, while doing so, contacted one of our colleagues in the US, Dr. Dan, who’s been here on two previous occasions, to go over them with him. Using a video link on WhatsApp, we scrolled through the images and were even more impressed with the severe and most definitely irreversible damage that existed on the scan, as well as the likelihood that this represented an entity known as diffuse interstitial pontine glioma, or DIPG, which, given the extent of the lesion burden, would be universally fatal in this case. Natalie and Meredith, with the help of Dr. Anne, went back to talk to the family and to give them our final prognosis which was, of course, very grim and not survivable. They were thankful and somewhat relieved as it was clear that they had been bracing for this information given her the terrible condition that she appeared to be and the fact that she had no improvement despite having received all of the treatment she had been given.
We came home after a long day of training, meetings, patients and the residents just getting their feet under them, to enjoy our little home away from home in the Raynes House, with its gorgeous views and the sounds of the many birds in the trees surrounding us. Relaxing with some gin and tonics, such a natural and refreshing drink here in East Africa, we all relaxed and told stories of the day with Shama eventually joining us after her travels throughout the NCA in search of rabies exposures. Being here at FAME is a gift for each of us and the ability to give back has made it so.