This week we had a special visitor to FAME, little Maria*! 

In 2018, 2-year-old Maria was born in a Karatu clinic, six miles from FAME. She was one of three triplets and sadly, the only one to survive. Born at only 30 weeks and after the loss of the other triplets, the doctors at the clinic in Karatu advised her to come to FAME urgently. Maria and her mother arrived at FAME as a last resort to try to save her life. 

Mama Maria knew of FAME, having grown up and still living in Karatu; however, she had never been here before. Doing everything she could to save the life of her baby, she looked for a taxi that would bring her and her critically sick daughter to FAME. 

Mama Maria had not expected this tragic turn of events. Her first children are twins, who were delivered naturally and are healthy and thriving. When she found out that she was expecting triplets, she was shocked but expected an experience similar to her first one.

Once at FAME, Maria spent 26 days at FAME’s special nursery on oxygen. She was in a critical condition and the mother was losing hope that she could recover. 

“I cannot put into words how good the medical care at FAME is. When we came here, I had suffered a huge loss and had completely lost hope that she could be saved. Over those 26 days that Maria was in the special nursery, my mental health took a hit. I was sure that she was going to die just like the others.”

However Mama Maria found lots of support and encouragement from the nurses at FAME.

“The nurses really talked to me and encouraged me. Without them, I would not have survived that terrible time. They became my friends! We celebrated every little progress Maria made, and that slowly started giving me hope.”

After 26 days, Maria was ready to go home and meet her older siblings.

“I recommend that everyone come to FAME when they’re sick. The level of care is very high. I wish I had given birth here, maybe all my babies would have survived!”

— Mama Maria

*While the patients’ names have been changed to protect privacy, permission was secured to share his photos and stories with FAME supporters, and to raise awareness of available medical care at FAME.

Frank* is only 4-years-old. He is at FAME because he suffers from epilepsy, a brain disorder characterized by repeated seizures. He has had this disorder since he was nine months old. 

This is not Frank’s first visit to FAME. Frank has been here many times, including once to see Dr. Michael Rubenstein and the team of neurology residents and fellows from the University of Pennsylvania and Children’s Hospital of Philadelphia, who come to FAME twice a year to provide neurological care to our patients. 

Frank is back at FAME because he suffered 16 seizures last night, according to his mother. Lately, he has experienced an increase in seizures, which has led to him being pulled out of school. His school has been very supportive of his condition, but when his seizures happen every other hour, they cannot handle it. He's also running a fever that won't break. His mother is very worried about him

“The seizures have gotten worse lately, and the high fever is a new thing. I'm happy that a well wisher helped me bring him to FAME. Frank was on medication for six months before, and that helped him tremendously. I’m here to ask the doctors if they can help me control these seizures, maybe with the same medication again.” - Mama Frank 

At FAME, Frank and his mother are working with Dr. Anne Ghati, FAME’s focal neurologist. For almost 10 years, Dr. Anne has been working closely with Dr. Rubenstein’s team of Neurology residents and fellows, learning a lot in the process.  And just this May, Dr. Anne spent one month at University of Pennsylvania doing an observership with their neurology team.

“I am very familiar with Frank’s case. On the day he was admitted to the inpatient ward in the morning, he had already suffered four seizures. His mother explained that he got seizures after every one to two hours. I prescribed him phenobarbital, a prescription medicine used to treat and prevent the symptoms of seizures. Due to this, he only suffered a few seizures during admission.” - Dr. Anne Ghati

In some cases, epilepsy can have a genetic component, which may be the case with Frank, as his mother recalls having something similar between the ages of three and seven. 

“My mother tells me that I also had seizures when I was young. She is not sure whether it was epilepsy since I never saw a doctor and the condition resolved itself, but I fear this might be what Frank has. His two older siblings are okay though, they don’t get seizures. It’s only Frank.” - Mama Frank 

Frank also had the chance on this visit to consult visiting volunteers, Marin Jacobwitz, NP and Dr. Daniel Licht, who are visiting pediatric neurologists from the University of Pennsylvania.

“I love FAME for their good and caring service. When he was admitted to the inpatient ward, every time Frank suffered a seizure the medical staff would come running to help me and make sure that he was okay. When I came to the reception the first time, they immediately fast tracked me into seeing a doctor. I didn’t have to wait in line with a child suffering seizures. I was and still am very grateful to FAME. You share the burden of this disease with me. Thank you!”

— Mama Frank

*While the patients’ names have been changed to protect privacy, permission was secured to share his photos and stories with FAME supporters, and to raise awareness of available medical care at FAME.

As neurologists, our instinct is to observe and start assessing patients from the moment they walk through the door. When I first spotted this child, it was not immediately clear why she had come to see neurology.  Having no pre-registration and no prior medical records available, I sat looking at her while the interpreter introduced us to her mother in Swahili. I noted a bright, beautiful, 2-year-old child, who was smiling at me and curious about the clinic visit. Only when her mother started to explain why she had come, did I notice a mildly spastic right arm and leg. Her mom said that she always had weakness on the right side, and although she was now 2 years old, had not yet started walking. It quickly became apparent that the child had suffered a neonatal stroke. 

The most important intervention for children who have suffered a neonatal stroke is therapy. This is especially true early in life to help their brain rewire the area that was injured and avoid spasticity and contractures, which can make it permanently difficult to use the limb. I was only a few days into my rotation in Tanzania and had already learned that access to physical therapy, especially in the more rural area where we were practicing, was challenging. I started to feel a sense of frustration, that I had little to offer this family as they likely would not be able to afford a trip to one of the larger cities to get the therapy services she needed. After talking with her mother more and conducting an exam, I learned that she was already pulling to stand and taking steps with very little hand-holding from mom. Despite the weakness, she was able to support herself well on her right leg and also was using the right arm to reach for and hold objects. Her speech and thinking were right on target for her age, my doorway assessment of a bright, curious child was spot-on. 

I explained the diagnosis of neonatal stroke to her mother, but I was encouraged by her development so far. Although she will definitely be a left-handed person, and probably walk with some degree of a limp, I was optimistic that she would soon start walking independently, and she would do very well cognitively. It was also impossible not to comment on what a beautiful, “mzuri” child she was. She was one of those kids that as soon as you start to interact with them, you can’t stop smiling. She was engaging, playful, and had an infectious smile. 

As the interpreter started to translate, I sat in shock as her mother burst into tears. I wasn’t sure if this was the first time anyone had used the word “stroke”, or if she was upset about my comments on her daughter’s weakness. I felt terrible, and wondered if I had been too direct in my delivery. To my surprise, I then realized her mom was crying tears of happiness. She was relieved to hear my assessment and finally have a diagnosis. She has been told by a doctor in the past that her daughter would never walk, talk, or interact with the world in a meaningful way. This had been weighing on the family for the entirety of her daughter’s life. Not only is this sad, but can be incredibly detrimental to the child. If the family believes there is no hope and does not engage with and support their development, the child can have significantly worse outcomes. Fortunately, this was not the case with my patient. 

I was reminded at this moment that healing someone does not always involve doing something. Many people who go into medicine, myself included, are motivated by a desire to “fix” things, either with medication, procedure, or intervention. One of the both challenging and motivating things about neurology is the many diseases for which we still don’t have a “fix. Practicing in the United States where we are surrounded by “cutting edge” research and technology, and heroic survival stories flooding our news feeds, patients come to us expecting miracles, often after irreparable neurologic injury. While we have made some incredible advances, diagnostics and therapies are not available to everyone equally even within the US, and especially less so in most other parts of the world. In this moment, I was reminded of the incredible healing power of knowledge and thoughtful dialogue. In residency, I realize now I had lost sight of this. We are often stressed, rushed, tired, and burned out. I found myself skipping that extra step to explain things a little more slowly, thoroughly, and empathetically. This mzuri child and her mother reminded me how powerful this can be, and is something I will consciously try not to lose sight of upon returning home. 

I am certain that I gained more from my experience at FAME than I was able to offer to the patients in my short month there. This is not how it is supposed to be, but I think it is inevitable as I have so much to learn. It serves as motivation to use what I have learned to help others for the rest of my life, both in practicing medicine and in being a kind, responsible, and empathetic human during our short time on earth. 

Sehewa Mganga, FAME’s RN Head Anesthetist also trained as an Ophthalmic Assistant and has 10 years of experience practicing optometry. FAME has been receiving more and more patients in need of eye care. In June alone Sehewa treated 48 optometry patients. In order to support the growing needs around optometry care, FAME has procured two new digital machines for conducting eye examinations. 

Picture 1: Slit Lamp, a microscope with a bright light that enables a closer look at the outer and inner structures of the eye, in order to detect diseases.

Picture 2: Digital Visual Acuity Chart, a comprehensive vision tester operated by a remote with dedicated keys for each chart. This makes Sehewa’s job much easier, by eliminating the switches used on traditional charts. 

These two machines will be of great use to FAME, modernizing our eye care department and improving examination, diagnosis and treatment. They will help reduce referrals to other hospitals by better positioning us to detect more eye conditions earlier, continuing FAME’s mission of providing comprehensive healthcare for the the close to 3 million people in FAME’s catchment area. 

Some of the most common diagnoses that Sehewa treats include allergic and bacterial conjunctivitis, cornea ulcers, blunt trauma, extra ocular foreign bodies and chalazion (eyelid cysts). All of these conditions can now be detected and treated early thanks to these machines. FAME also recently received a donation of 300 fashionable FAME sunglasses for photophobic patients!

“There are a lot of people suffering silently from different eye disorders. Let’s be proactive and conduct regular eye checks with the right equipment, preventing further complications.”

— Sehewa Mganga, RN

Mama Lucas was a worried woman. Her 1-year-old son Lucas* was having a medical condition that was not getting resolved, despite several visits to different doctors. Lucas had a swelling in his groin area, and every time she changed his diaper or gave him a bath, she noticed that the swelling got bigger and bigger. In the beginning, it was just the swelling, but with time she noticed that it became painful to the touch, as Lucas would cry hysterically if she touched it. In a few weeks, Lucas started vomiting and experiencing diarrhea. 

“I was very worried. Lucas’s condition kept getting worse, despite me visiting different clinics. The last clinic we went to suggested that circumcision would solve the issue, but in my heart I didn’t agree with this. I can’t explain it because I’m not a doctor, but somehow I knew he needed something more drastic than just circumcision to get better.”  

Lucas and his mother live in Arusha, 88 miles from FAME. So how did they end up at FAME?

“It’s actually a strange story! My husband’s relative passed away and we came to Karatu for his funeral. During the funeral, one of his older aunties collapsed from grief and was unconscious for a long time. Someone suggested that she needed to see a doctor, and asked us to take her to this hospital called FAME.”

When they got to FAME, Mama Lucas was impressed with the swift medical attention the auntie got, the professionalism in which the medical staff handled the case, and the size of the hospital.

“I remember asking myself how such a good hospital ended up in a village! In my experience, such a hospital could only be located in a big town”

— Mama Lucas

Mama Lucas went back home to Arusha and didn’t think about FAME again. That was until her son’s condition kept deteriorating. 

“I was losing my mind. The boy kept getting sicker and sicker and we couldn’t figure out why. In my state of desperation, I remembered FAME hospital and decided to bring him here. My friends were very surprised when I told them that I would be leaving for Karatu to seek medical care. ‘It should be the other way round!’ they said, over and over.” 

Undeterred, Mama Lucas boarded a bus to Karatu, and then a boda boda (motorbike) to FAME. Once at FAME, Lucas was examined and sent for an ultrasound and blood tests. The doctors discovered that Lucas had an inguinal hernia and would need surgery. 

Relieved that finally she had a diagnosis, Mama Lucas consented to the surgery and waited. The doctors had explained the procedure to her in detail, and that gave her confidence that he was in good hands. 40 minutes later, Lucas was out of surgery, and it was a success!  

“I’m so thankful to FAME. I cannot even express how much! So grateful! Everybody here has been so kind to Lucas and I. We have been very well taken care of. The demeanor of the staff has been the most comforting. Lucas is now doing very well and we will be going back home soon. My friends in Arusha cannot believe it, they now want to visit FAME just to see!”

— Mama Lucas

FAME is happy to receive Mama Lucas’s friends and anybody else who would like to visit. Interested in touring FAME? Contact our Volunteer Coordinator, Prosper Mbelwa at volunteer@fameafrica.org. 

*While the patients’ names have been changed to protect privacy, permission was secured to share his photos and stories with FAME supporters, and to raise awareness of available medical care at FAME.