Saying my final goodbye to our staff during our Friday lunch

By Kathrine Kuhlmann, Communications & Marketing Coordinator

I first joined the FAME team a little over a year ago as the Communications and Marketing Coordinator and, let me tell you, this is an extraordinary place. I know what you’re thinking: it’s my job to say that. The thing is, FAME makes my job incredibly easy. I get to share the stories of compassion, of lives saved, of hard work, and of the miracles that I see on campus every day. I also get to interact with our incredible patients and community. I get to know the dad who stayed with his son in our inpatient ward for months and we still greet one another when we see each other in town. I get to photograph a young Maasai woman who speaks neither Swahili nor English, but has survived Cerebral Venous Sinus Thrombosis and is now giggling with me looking at her image, happy and healthy. I get to share a meal with a mama who took in a child from our maternity ward when his mother passed away and celebrate with her when he’s beginning to crawl! I get to cry tears of joy with a father whose 13-year-old son can finally, for the first time, get consistent care for his epilepsy and begin to learn what it’s like to live a life with an effective treatment plan. I get to hear stories of tragedy and triumph, of sadness and strength, of death and life, and I get to share those stories with you.

There are certain sounds that echo through the halls that I’ll never forget from my time at FAME: the metronome-like consistency of a patient monitor matching pace with the heart of a critical patient, the sigh of relief and absolute bliss after a healthy delivery, the wailing of a mother who lost a piece of her heart unexpectedly in the emergency room, the laughter of a child who has recovered from his skin grafting and finally gets to go home, the stillness of campus after a long day. Working in the health sector is a daily challenge filled with these moments of both joy and sorrow, with incredibly tangible results: either the patient leaves healthy or they don’t. However, I’ve been grateful to see how, independent of the outcome, the FAME team uses each case as an opportunity to learn, to understand, and to build their treatment capacity.

Working at FAME has had a massive impact on me, and not just that I can keep up with a clinical conversation without Googling every other word or that I can see bodily fluids without spewing my own, but an impact on how I approach community development. I have never seen a hospital, in US or abroad, which is so attentive to each individual patient, acting out of genuine empathy. I’ve also never met a team so eager to learn from challenging circumstances, new patients, or specialty volunteers. During my time on the Karatu campus, I’ve gotten to work with our 157 member awe-inspiring, genuine, and selfless local staff and over 60 incredibly thoughtful, kind, and skilled international volunteers and I’ve learned countless lessons from them all. I’ve learned how to be an effective teacher, how to approach each day with joy and gratitude, how to make a hat out of a cloth napkin, how to hold on to hope, how to make the perfect chapatti and beans, how to be a good story teller, and, most importantly, how to be a life-long learner. To the staff, the administration, and the volunteers, thank you. Thank you for being my family, for loving the community of Karatu so well, and for making me a better person through it all. With all my heart, thank you.

By Business Volunteer, Diane Berthel

This is my third trip to FAME and it’s like coming home.  As the first business volunteer, initially we were uncertain about the value I could bring.  Turns out supporting the management staff connects on every level for me and them. Sometimes I’m not sure who is learning the most!  They are surprisingly self-aware and a most eager and grateful group of students.  I get more than my share of wide eyes and big smiles when something connects.  I can see that, so often, they have already envisioned it at work with their teams.  It makes the work deeply satisfying and a wonderful learning experience for me.

On a macro level I improve the skills and, equally important, the confidence in their leadership and management.  The first year I was here for only 3 weeks.  I got to know them, earn their trust and ask what they needed.  I just had time for a couple of sessions on leadership styles. Discovering that their learning model was lecture and write down every word the lecturer says, I used lots of activity and small groups.  Although uncomfortable at first, they quickly took to the change.

 I should say that my first two weeks, I mentored the wonderful COO and made lots of rounds on the hospital campus to get to know all staff including housekeeping, gardening and construction workers for the new maternity center.  Working on my Swahili, I greeted everyone with Jamba and got lots of smiles and waves.  Eventually someone shared with me that “hello” was Jambo - not Jamba.  It turned out I had been saying “fart” to everyone for two weeks.  When I finally had a session and introduced myself as the Jamba woman it was instant chemistry. 

 When I left, a common request for my return was coaching – both individual support and the skills to coach their team members.   On my second trip I coached nearly every one of the managers.  Understanding the barriers to the typical models we use here – cost and unnecessary complexity - I created a very simple model for our first step.  I asked them several questions, including, list everything they do in each day.  We then put each of their activities in a matrix to examine their effectiveness and success in building the skills of their team.  I quickly learned that to succeed with this, we needed to vision what their role would look like if they were not performing all activities.  That included what FAME could be in the future; how things like data collection and analysis would be a higher-level responsibility for managers. It helped them to see how building skill and competence in their team would allow them time for higher level work. 

For some departments, I did team building sessions to warm up their teams.  In these sessions we looked at stages that lead to team accountability and results orientation.  In her coaching session, one of the nurse managers asked how you reward team members for results if there is no money. We discussed selecting a team member who stands out in their contribution.  Then end a meeting recognizing their excellence and asking them to share their secret with the team – both rewarding excellence and creating a learning opportunity for the team. Eyes wide she raced from the room and I don’t doubt that she implemented that very afternoon.  A few hours later I received a text that said, “You make that my day be good!”

I’m back for six weeks and we have a full agenda.  Coaching follow-ups, with a focus on strategic planning and resource management, plus tools for communication and negotiation are at the top of our list.  Already three days in, the momentum is contagious! 

Your support is critical to FAME serving the rural people of Tanzania and growing as a model for healthcare in the developing world.  I’m thrilled to share anything that will inspire your confidence in this amazing group of managers!

By CHOP Neurology Volunteer, Marissa Anto

The new mama, Editha, tightly held her small six-week-old baby; only a tiny head visible, floating in a sea of pink ruffles from her dress collar and wrapped snuggly in a far too large fuchsia felt blanket. Just for context, it’s a balmy 80 degrees Fahrenheit outside. I notice baby Glory’s elongated almond eyes and immediately recognize the tell-tale sign of Down’s Syndrome. Before obtaining any history, I decide to examine the infant to confirm my suspicion. I find she has all the characteristic features including up-slanted palpebral fissures, transverse palmar crease on her hands, low-set ears, sandal gap toes and an increased skin fold at the nape of the neck. I start asking the young first-time mom questions about her pregnancy, the delivery and Glory’s first few weeks of life. Editha brought Glory in to see a neurologist at our mobile neuro clinic because she felt like the baby’s tone was low. Luckily, despite being small for gestational age (and with low tone), Glory was otherwise neurologically intact, feeding well and gaining weight. Yet I was concerned about her anterior fontanelle or soft spot on the top of her head because it was abnormally full and can signify hypothyroidism in a newborn. Hypothyroidism is a common hormonal abnormality that occurs in children with Down’s Syndrome and infants must be screened regularly for both this and blood count abnormalities as Down’s children also carry an increased risk for hematologic malignancy. Although Glory’s exam was largely reassuring, she needed to come to FAME ASAP for bloodwork (which couldn’t be done at her local clinic) to ensure she didn’t have any thyroid or blood abnormalities. Children with Down’s syndrome also carry a higher risk of congenital heart disease. Fortunately, Glory had a normal oxygen saturation and normal pink coloring without any appreciable heart murmurs. She would eventually need an echocardiogram or ultrasound of the heart to definitively rule out any heart defects.

As a pediatric neurologist, I am used to having tough conversations with families, explaining complicated and often distressing diagnoses. But how do you tell a new mom that her baby has Down’s syndrome when her language doesn’t have a word to describe the condition? In the United States, Down’s Syndrome or Trisomy 21 is fairly well-known to the public, with an estimated incidence of 1 out of every 700 babies born in the U.S. In Tanzania, this special population and the vocabulary used to describe them is virtually absent from mainstream society. I struggled to explain the condition and its common co-morbidities to Editha via an interpreter. Dr Anne tried looking up a Swahili word for Down’s but couldn’t find it. She asked one of our medical student interpreters, Abdulhamid, who also couldn’t come up with the appropriate terminology. I asked our social worker Kitashu, but he too said that, although he had previously seen some children with this condition, he had never known what it was called. Dr. Anne finally Googled a picture of children with Down’s and showed Editha, a look of understanding registering on her face. She said she now recognized what her baby has. 

Later that day, I searched online and found few posts on Down’s Syndrome in Tanzania. One was written by a mother of a child with Down’s Syndrome and was titled “There Is No Word for Down’s Syndrome in My Language.” In the article the mother details how there is no Swahili word to describe people with Down’s Syndrome and reflected that she had never known or seen children with Down’s Syndrome growing up in Tanzania. She speculated that families may have hidden children with Down’s or, even worse, completely neglected them due to the cultural stigma surrounding having children with special needs. She noted that there is virtually no data that exists regarding the incidence of Down’s Syndrome in Tanzania. The author of the article recounted that when her child was diagnosed with the condition, she unfortunately had very little support or guidance from the medical system in terms of what to do or expect for her child.

I wanted to make sure that this young mama before me did not feel the same way. I explained Down’s Syndrome to her and all the things we needed to screen Glory for at FAME. I explained that the baby’s fontanelle was full and that made me nervous, but the rest of her exam was reassuring. I gave precautions to return immediately should the baby develop any lethargy, vomiting, feeding intolerance or altered mental status prior to coming to FAME. Fortunately, Editha and Glory did come to FAME as instructed the following week. I was encouraged that Editha was able to make the two-hour journey to get her child the care she needed. Glory’s thyroid studies and blood count were both found to be normal. I reiterated all the things that would have to be routinely checked and what Editha should monitor for in baby Glory. I tried to reassure Editha that children with Down’s Syndrome can often lead very full, largely normal lives as long as their specific health care needs are met. Editha told me she only hoped that her baby would remain healthy and that she would do whatever she could to ensure this. This meant traveling two hours each way to FAME for a cardiac evaluation in a few months and making the long trip every time Glory needed blood work. I was reassured to see Editha so well-bonded to her baby, her affection and love obvious. She would do anything for this precious baby. And that is truly the most important thing a pediatrician can wish for any child but especially for a child with special needs.

 NOTE: The names of mama and baby have been changed to protect their privacy

By UPenn Volunteer Neurologist, Mike Baer

I met my first, and only, Hadza patient several days after arriving at FAME. We had been told that she was presenting with a seizure and a headache, but when I met her the story was more concerning. She had collapsed suddenly two weeks prior, seized, and since then hadn’t spoken a word to her family. When I examined her she was mute and weak on the right side. A head CT showed that she had a large intraparenchymal hemorrhage extending from the left temporal lobe to the left frontal lobe, which we felt was caused by either a ruptured aneurysm or a mass that bled. Either way, the prognosis was poor. We started her on antiepileptic medications and hoped to gain more information from a CT scan with contrast, which could reveal an underlying mass. 

The Hadzabe, I learned, are an ancient tribe of hunter-gatherers, who are struggling for survival and live in the Lake Eyasi region, just an hour or so away from our home base in Karatu. They traditionally communicate with a “click language” and survive on hunting game and foraging for fruit and honey. There are no formal leaders and little social hierarchy, so most important decisions are made through group discussion. With the rise of agriculture, livestock herding, and tourism their ability to survive as hunter-gatherers has become tenuous, and today less than 1500 individuals remain, including our critically ill patient. 

Unfortunately, just two days into her hospital stay, the Hadza patient had a second seizure. She was extremely lethargic afterwards, and the head CT with contrast showed that the bleeding had extended into her ventricular system, which was beginning to expand to create hydrocephalus. Her prognosis, even with surgery to relieve the hydrocephalus, had gone from poor to grim. We spoke with Dr. Badyana, the physician in charge of her care, and together we sat down with the daughter, who had remained at the patient’s bedside. Dr. Badyana explained that the patient’s condition had worsened and that the bleeding would ultimately end her life. We showed the daughter the images from the CT scan. She didn’t say much and she remained calm but it was clear that the news affected her greatly. Her demeanor was one I had seen before, back in Philadelphia during some of my end of life discussions for similarly dramatic intracranial injuries. The Hadza woman passed away comfortably the following day. 

During our four weeks at FAME, I and the other neurology residents from the University of Pennsylvania had the opportunity to interact with and learn from members of a variety of other tribes. We visited Daniel Tewa, a member of the Iraqw tribe and local farmer and historian, who showed us a traditional house that he had constructed, modeled after the home he was born in. He taught us about the traditions and customs of his people, many of which were changing from the pressures imposed on the Iraqw tribe from outside forces. We also treated a large number of Maasai and one of our translators, Kitashu, a Maasai and a FAME social worker, was helpful in helping us understand Maasai culture and how it related to the counseling and treatments we provided to our patients. I was particularly struck by the close social circle I witnessed and the readiness of the community to help in times of need. 

Working at FAME was an incredibly valuable experience. The clinicians, already proficient in a wide range of domains, were eager to learn about neurological diseases, a topic not widely emphasized in Tanzanian medical education. While we did treat a large number of patients, the most rewarding aspect of my work at FAME was helping the medical staff strengthen their capacity to independently care for many of the neurology patients that we saw. I look forward to seeing how FAME and healthcare in Tanzania advances to address the unique needs of the country’s diverse population, from the Iraqw to the Hadzabe and the Maasai. 

By Volunteer Neurologist, Joyce Liporace

As a neurologist in private practice in the United States for over 30 years, I have found that caring for patients involves ordering a lot of tests and imaging studies. I am dependent on MRI scan results to formulate a treatment plan for my patients. While I was unsure of myself and wondered if I had much to offer without these results, I decided to spend a month volunteering at FAME Medical near Karatu, Tanzania. As soon as I arrived, I respected and understood the value of FAME’s international volunteer program, which encourages participation in patient care and, more importantly, working side by side with FAME’s Tanzanian doctors and nurses to share experiences and skills.

One of my first clinic patients was a 39-year-old man who thought he was having fainting spells. His description of stereotyped events allowed me to confidently diagnose him with seizures. We reviewed the typical risk factors for epilepsy, which were all negative. However, during the examination, I asked him to remove the wool cap from his head and discovered a left frontal skull defect. Stoically, he disclosed that he had been the victim of a leopard attack at age 29, resulting in the removal of a piece of his skull. That was undeniably a novel seizure risk factor — and a perfect example of the resiliency of the Tanzanian people! Their ability to move on from injury or hardships is amazing and inspiring.

On the Inpatient Ward, I cared for a 50-year-old woman who was told that she was pregnant. The pregnancy seemed to be prolonged, so she came to FAME for another opinion. She was NOT pregnant. Instead, Dr. Badyana, one of 14 skilled doctors at FAME, removed an eight-kilogram ovarian mass. She was very pleased that she was not pregnant! This was a perfect example of the comprehensive care provided by FAME doctors. They are excellent diagnosticians (often with limited lab tests), medical providers for the full spectrum of life from neonatal care to geriatric care, and skilled surgeons! I am in awe of the breadth of their abilities and felt humbled to work alongside them.

I did not expect to form solid friendships in my short four weeks at FAME but I was wrong. I was welcomed by the entire staff at FAME — the doctors, nurses, receptionists, support staff and, of course, Dr. Frank and Mama Susan. One of the Tanzanian doctors, Dr. Lisso, even came to Arusha to meet my husband, Tim and son, Michael, when they arrived for our safari. While at FAME, I was honored to travel to Ngorongoro Crater to visit a Maasai village and spend time with FAME’s warmhearted social worker, Kitashu, and his family. That afternoon had a permanent impact on my understanding of other ways of life.

An unexpected pleasure during my time was getting to know other volunteers. I walked with Jen, a volunteer nurse in the Inpatient Ward, to Gibbs Farm to meet Kim and Tracy, a volunteer nurse practitioner who specializes in Diabetes and volunteer neonatal nurse, for a fabulous brunch, went to Sparrow for dinner, and hopped in a bajaji, a three-wheeled vehicle akin to a tuk tuk, with Kathrine, FAME’s communications coordinator, to go fabric shopping.

There are numerous challenges in providing medical care in a developing country. The unique team at FAME finds ways to overcome these hurdles on a daily basis. I will always be grateful for the chance to share my experiences and learn new skills with my FAME family. My voyage to FAME led me to new landscapes far from home, but it felt like familiar territory in just a matter of days.