It had been a pretty incredible visit to the Serengeti over the weekend and it was now back to work at FAME for our last week here as we would all be leaving Saturday in one way or another. Sara and Ankita had planned for a week-long vacation beginning with some hiking around the lower altitudes of Kilimanjaro followed by five nights in Zanzibar, while Taha will be leaving back to the US Saturday night. I’ll be staying in Arusha with friends for two nights to do some visiting and will then be heading back home on Monday night, arriving to Philadelphia on Tuesday afternoon given the 7-hour time difference in our favor and the very short layovers in Dar es Salaam and Doha. I’ll have to admit that I’m ready to be back in Philly after six weeks in Tanzania, though I suspect I could “tough” it out much longer here if I didn’t have other reasons for returning.
Showing up for morning report after being gone for three days is always a bit exciting as we get to find out what cases had come in over the weekend and may still be in the ward for us to see, or not if they had been severely ill and passed away or had been transferred out. There had been a tourist admitted last night after falling in their lodge and suffering a fractured hip who would need transfer back to the US that was being worked on by Dr. Gabriel and Prosper given all of the paperwork that needed to be supplied to the insurance company for the necessary air evacuation as they would need to be taken down to the airport in Manyara first and transported to Kilimanjaro or Nairobi by Flying Doctors, the in country evacuation service that we all register for when coming here, and would then be flown to the US on a larger medical air transport. One should always make sure you have good evacuation insurance when traveling to low resource settings which is why we all have both Flying Doctors and International SOS, the latter a company that Penn subscribes to and supplies not only the evacuation insurance, but also health insurance should we need medical services here.
I had forgotten that today was the day the group from Tarangire had told us they were going to come visit us. Chief Lobulo is the village leader from just near the entrance of Tarangire National Park who had brought several patients to see us a few years ago and recognized at that time that there were many of his villagers who were appropriate to see and could be helped. Shortly after that very first visit, he showed up with a van full of neurology patients who were all completely appropriate to see us with disorders such as epilepsy, developmental delays secondary to birth injuries, and a number Down syndrome patients. Since then, he has continued to bring us patients, all of who have definite neurologic problems and all of who are entirely appropriate for us to see given their diagnoses. He has also continually asked for us to have a clinic in their area, but unfortunately, they are outside the Karatu district and it would require permission from the district and regional health officers, so for now, we have decided to assist them with transportation rather than having a mobile clinic go to their village. Chief Lobulo is an incredibly caring individual who has taken it upon himself to see the best of medical care for his villagers and I have always felt a debt of gratitude to him for having pursued this possibility.
About two years ago, he had brought two adolescent Down syndrome boys to see us, both of who were pretty high functioning and delightful to meet. Neither had any serious neurologic issues or deficits other than the obvious intellectual issues, and neither of them had been to school due to their condition, which was a real tragedy as their hope for any sense of self-sufficiency in the future was severely limited. I had recognized that in these two boys, there was still significant hope for us to find some reasonable solution to this dilemma, and one that would allow them to learn specific skills which they could use going forward to help support themselves in a community. With Kitashu’s tireless efforts and amazing research, he was able to locate a vocational rehab facility in Usa River on the other side of Arusha that would be perfectly appropriate for them and, after each of them visited the school with one choosing to be a tailor and the other choosing to become a welder, we arranged for them to attend the school for two and three years, respectively. With the help of generous donors and a GoFundMe site (https://gofund.me/9d3e6a7b), I was able to raise the necessary funds to get them started and to continue their school, though they will always be able to use additional money for incidentals while away at school, transportation, and hopefully a good start for their new lives. Though Tajiri and Amani will soon be finished with their schooling and have been doing incredibly well with their vocations, I hope to help other similar children who are in need of such assistance that their families are completely unable to provide and for which absolutely no public programs exist here.
The patients that Chief Lobulo brought to see us today were very challenging, as they very often are, and one of the first we saw was a 9-year-old boy with a history of hydrocephalus and difficulty walking. He had undergone a ventriculoperitoneal shunt at 2 years of age and his mother reported that he has no progression to his walking difficulty over time. His head was normal size suggesting that his shunt had worked well and as there was no report of recent decline, there was no reason to think that his shunt wasn’t working. He had no weakness in his legs, but when he walked, he seemed to lock his knees as if he had proximal leg weakness, but was able to squat and then raise back up without difficulty and muscle testing of his legs did not reveal any weakness. With outstretched hands he also had some pseudoathetosis and he was somewhat ataxic in his gait. Given the fact that there was no progression of his condition, it was our feeling that this was most likely something that had been acquired early in life and there was little need for a CT scan of his brain and, thankfully, we were able to reach out to our ace pediatric neurology team for their thoughts, hearing back first from Dan Licht, who has been to FAME on several occasions, with a likely diagnosis of a cerebellar germinal matrix bleed at birth which would explain his constellation of deficits and his early hydrocephalus. This type of help from our colleagues is priceless as I was having significant difficulty localizing this patient’s problem.
We did see another Down syndrome patient today, who was a 14-year-old girl with very obvious physical stigmata of Down syndrome, or trisomy-21, but had never been diagnosed by anyone in the past or at least it had never been explained to the family she seemed so delayed and had not gone to school. When Marissa Anto had been here several years ago, she had written a short piece about the lack of a word in Swahili for Down syndrome (https://fameafrica.org/journal/2019/10/4/theres-no-word-for-downs-syndrome-in-my-language) which she discovered when explaining to the mother of a young six-week-old child whose mother had brought her in because she had noticed that her tone was low. The family of the child we were seeing today had been completely unaware of the cause of their child’s disabilities or of the special needs she had in the past or going forward. We checked her thyroid status as these patients will commonly have problems with hypothyroidism, but there are also other conditions that are typically monitored for (congenital heart disease, cervical instability and leukemia) and, thankfully, this patient did not appear to have any of these issues, but would need to be followed going forward to monitor for them. There was little for us to do at the moment other than labs, but we did educate the family to make them more aware of these special needs.
One of our other cases was quite sad and, unfortunately, something that is seen throughout the world quite unnecessarily. A 22-year-old woman was brought to see us from Tarangire to assess her neurologically for she had severe intellectual impairment that had been present since birth. She was accompanied only by her sister and, therefore, we had no birth history whatsoever as this would have been very helpful with our assessment. She was significantly microcephalic with a very “syndromic” appearance and had no expressive language function. Her comprehensive language function was very difficult to assess and she mostly sat looking at her examiners during the entire visit while her sister did her best to fill in any of the details that she could.
Then at some point, when her sister was asked about how she was functioning at home, it became evident that the patient had a two-year-old child at home that she was apparently caring for. It was not entirely clear to us what her actual abilities were to care for her child, but it was very obvious that they had to be very limited at best and we had difficulty imagining just home much further she would be successful in raising this child which we went on to explain to her sister. As for any therapy that we could provide in regard to her neurologic status, there was very little as she was not agitated and required no treatment for any behavioral issues, but we could counsel her family immediately on the incredibly important need to place her on effective birth control. Given her very severe degree of intellectual impairment, she was not competent to make any decisions for herself nor did she have the ability to give consent for any therapy, let alone to have ever consented for sexual intercourse. The fact that she had already become pregnant and given birth to a child was extremely tragic and was not something that I wished to see repeated if at all possible. We expressed our concern to her sister and recommended that she speak with her family by phone to obtain consent for the patient to hopefully receive a progesterone implant today that would last three years or more and prevent another incredibly unfortunate event such as this from occurring. As I mentioned earlier, instances such as these are not limited to low resources settings such as Tanzania, but occur worldwide including the United States.
We were able to finish in clinic early enough for us to consider taking a walk down to the brick quarry and up to Tloma Village near Gibb’s Farm. The walk is great not only for the exercise, but also for a way to view the very important process for producing bricks that are used in most of the buildings here in Tanzania. The quarries, which are located in areas where the dense clay is easy to mine, are privately owned and workers will dig for the clay which is then formed into the bricks, but are not ready to be used until they are fired as they would dissolve with the first heavy rains and everyone would be unhappy. After the bricks are formed, they are then stacked into tall structures with a small amount of space between the bricks and one or two openings in the bottom where firewood could be placed and completing what is essentially a kiln. The entire stack is then covered with cow dung to further contain the heat inside. Once fired, the bricks are then ready to be purchased and used for building.
From the brick quarry, we continued walking on the Tloma Village Road that heads uphill to eventually intersect with the Gibb’s Farm Road in the center of Tloma Village. Along the road, we passed by numerous homes and several lodges, one of which, The Tloma Mountain Lodge, is quite beautiful inside and one of the older, well-known lodges here. Tloma village is large Iraqw cultural area and nearly all of the employees at Gibb’s Farm are from the village. A few yards from where these roads intersect is where Athumani, the artist, shows his work and there was a gorgeous piece that I hadn’t seen the other day and pictured women with baskets of fish on their heads walking through the water that so reminded me of my time at Ushongo Beach on the Indian Ocean watching the boats come in from fishing all night and the women would unload the first and bring them ashore. Athumani was grateful when I purchased the painting, telling me how much he appreciated my supporting him. What he didn’t realize, though, was actually just how very grateful I was to have been given the honor of supporting him and that it may have meant more to me than to him.
We walked home in the waning light as the sun was setting and as we climbed up from the quarry to FAME, I think each of us were quite thankful for the time we’ve spent here and the opportunities that we’ve been given.