The mood was sombre inside Headmistress Christina Maingo’s small, windowless office, a cement block structure with a single door. It clashed against the explosive giggles and joyful song that was emanating from the sea of four, five and six years olds gathered outside. They were happy. Visitors from America had arrived unexpectedly. They had reason to celebrate.
Moving purposefully in her hand-sewn batik dress that fit snugly around her ample bosom and waist, Headmistress Maingo dug through a stack of old books and loose papers piled high on her desk to uncover a worn Visitors’ Book. In Tanzania, it is customary to sign a Visitors’ Books wherever you go. People love guests, especially those from America (thankfully), and at hospitals, businesses and schools, like this government-run nursery school, signing the Visitors’ Book is an essential and first step to every welcome.
Pupils at the Tumbi Nursery School race to embrace their visitor, Unite team traveler Nina Evison, from Bronxville, New York.
I sat down on a white plastic chair, dug through my backpack for a pen, and flipped through the pages of the book, all of which had been discolored by years of dust and dirty fingers, to find the line where I should sign. And then, as always, I printed clearly: Anne Wells, Director, Unite The World With Africa Foundation, USA. I closed the book, smiled warmly and turned to rejoin my team who were dancing and carrying on with children outside. Headmistress Maingo grabbed my hand with her calloused palm, pulled me back, looked at me intently with dark eyes pained with worry, and said, “A child died this morning.”
And just like that, I was fully present.
***
For days I had been distracted, and I knew it. 7,750 miles away in Westport, Connecticut, my 14-year-old daughter was sick. Her blood sugar was soaring and plunging in the crashing and crushing waves of a perfect Type 1 Diabetic (T1D) storm that no amount of planning, exact measuring, careful injecting, analyzing or anticipating could control. Her insulin pump malfunctioned and failed the day after I left. In the near five years since her diagnosis our family has experienced many crises, challenges and setbacks—from site failures, tubing occlusions and transmitting errors and to dizzying lows and vomit-inducing highs—but never this.
For my daughter (and for every child on Earth afflicted with T1D, also known as Juvenile Diabetes because it most frequently affects children) insulin is life. The cause of T1D is still largely unknown. It is believed to be an autoimmune response gone rogue, ignited by a virus, gene or environmental factor, which causes the body to attack itself and ultimately destroy the pancreas’ ability to produce insulin. Insulin is the hormone essential for regulating blood sugar and powering the cells inside the body. Without it glucose levels rise uncontrollably and poison the blood stream, destroying organs and ultimately leading to shock and death. Before June 2015 I didn’t know much of anything about insulin or the pancreas, but when the nurse at Yale New Haven Hospital told me that her father and I would now be our daughter’s pancreas, we learned… quickly. T1D is a rare disease (afflicting about 1.6 million people in America; the global incidence is unknown), and it is very different than the far more common Type 2 Diabetes. Unlike Type 2, which can be often be prevented, reversed and controlled by diet, there is nothing to do to prevent the onset of Type 1 and there is still NO CURE. To preserve life, the disease must be closely managed with insulin 24 hours a day, 365 days a year.
For our family, our daughter’s pump — which is connected to her body by tubing and a needle injected into her belly and moved every three days — is how the insulin is transmitted into her body. We NEED it to work. When David called our medical equipment supplier to request immediate replacement it was Saturday (of course) and the company would not send us a replacement until Monday at the earliest. That meant that for the next few days our daughter would have to rely on insulin injections. While there are apps and books to help one make educated guesses about how many carbohydrates are in everything from a grape to a steak, numbers that are essential to determine how much insulin to inject and when, the truth is, beyond carbohydrates, such factors as stress, illness, exercise and even excitement can all radically affect blood glucose levels, which makes calculating insulin injections—at least to me—oftentimes feel about as scientific as guessing the number of pennies in a mason jar.
Day after day, from my helpless perch a continent away, I watched—with stress and anxiety—my daughter’s blood sugar rocket and plunge on an app on my iPhone that links via wifi to a sensor injected into her backside.
***
“Oh my dear,” I said now returning the tight hold of Headmistress Maingo’ hand. “Pole sana.” “I am so very sorry.“ Behind me the small room had filled with teammates and teachers. Unite’s Program Director Anty Marche was speaking with the head teacher in Kiswahili and translating in English. “It was a little girl. She was four years old. She died this morning. She had diabetes.”
Dear God. I strained to breath the hot air that was now thick with the smell of human perspiration. “How can we help?” I asked.
Headmistress Maingo made her way around her desk, shooing the group back out the door as she moved. As they disappeared one-by-one into the bright light of the scorching African equatorial sun, the air lightened and I was able to breathe deeply again. On her notepad was a list of names and numbers. I scanned the page and in my head quickly did the math: 100 TSH, 500 TSH, 1000 TSH, 2000 TSH and largest amount 10,000 TSH (which is about the equivalent of $4.50). “We are collecting donations to help the family with the funeral,” she said. I reached to my waist, unzipped my fanny pack — a fashion accessory I would never dream of wearing at home and would never dream of not wearing in Tanzania — pulled out 100,000 TSH (~$45) and handed it to Headmistress Maingo who was visibly startled by this thick wad of cash. I then stepped outside to gather my team, and there, in the shade of a magnificent Mchocho tree, was Unite’s Volunteer Coordinator Clara Ngowi lovingly leading the children in a new dance. Everyone was engaged and having fun. Life continued. Click HERE to see a 15-second video of Clara teaching the children.
Unite’s Volunteer Coordinator Clara Ngowi leads Loveness’ friends and classmates in a new song and dance.
***
At home, our daughter’s replacement pump arrived via Fed Ex Tuesday night. However, even with her new pump in place and the insulin flowing, her blood sugar continued to soar. But now it was because she had come down with the flu, and controlling blood sugar when a diabetic is sick makes dealing with a broken pump look easy. She and her dad both were coming undone. It was time for me to go home.
A week later I boarded an Emirates A380 double-decker jet plane to leave this dense bourgeoning city of ~5 million people, which seeps, creeps, stretches and crawls each year a bit further, north, west and south from its main port along the Indian Ocean. From my window seat, I observed clusters of half-built homes; piles of debris from ongoing road construction; and lines of multi-colored buses, lorries and flatbed trucks hauling huge, heavy and unimaginable loads to the interior of Tanzania and continent beyond. While gazing down over this sea of humanity, the desperation and despair that for so long was all I could see was soon replaced by the brilliant green hue of the Acacia and Neem trees; the Golden and Royal palms; the papaya, passion, banana and lemon fruit trees; and the spreading bushland below.
It was then that I realized that somehow somewhere along the way my guilt (over my daughter’s highs and lows), anxiety (about her health and her future), sorrow (for her sadness about being “different”), frustration (over countless sleepless nights), etc. etc. etc. had faded away. And in its place was the deepest and most profound sense of gratitude I had ever felt… for life, for insulin, for access to quality healthcare and modern medicine, and for the very possibility that my child can live — and IS living — a productive, happy, FULL life without a working pancreas, when the brutal, unjust and inhumane reality is that in the world below others cannot.
Postscript
Headmistress Christina Maingo and Unite’s Volunteer Coordinator Clara Ngowi with Loveness’ grandmother and father during their recent home visit.
The average life span of a child diagnosed with Type 1 Diabetes in sub-Saharan Africa is 12 months. *
We asked Clara and Headmistress Maingo to visit Loveness’ family on Unite’s behalf to extend our condolences and deliver gifts of food items. They met with Loveness’ father and grandmother and learned that Loveness had first fallen ill the year before. She had headaches and fevers, abdominal pain and vomiting, lethargy and weakness, and she was losing weight. One day, Loveness had a seizure while in church and her parents, who had no idea what happening to their child, took her to a local health center. They were told that their three-year-old daughter’s blood sugar was extremely high and were referred to Muhimbili National Hospital in Dar es Salaam. There Loveness was seen by a pediatric endocrinologist (as of 2015 there were only six pediatric endocrinologists in the entire country*) who diagnosed her with Type 1 Diabetes. Much like David and me, Loveness’ parents knew nothing about T1D before their daughter’s diagnosis. At Muhimbili, Loveness was injected with insulin and sent home with paracetamol (acetaminophen) and an antibiotic commonly used to treat bacterial infections. And for some time, things were relatively ok. This was likely because for children with T1D there is a “honeymoon phase.” Oftentimes after the initial diagnosis and first correction of blood sugar with insulin the pancreas is able to reenergize itself a bit and will continue to make insulin… less and less… for a while. However, in time, usually within a year, the pancreas WILL stop secreting any insulin at all and the body WILL become 100% reliant on external insulin for survival.
On January 26, 2020, Loveness’s parents brought her back to the health center. She had sunken eyes, rapid breathing, headache, muscle aches, severe dehydration, nausea, stomach pain and vomiting — all signs of Diabetic Ketoacidosis (DKA). Loveness was prescribed acetaminophen and an anti-inflammatory. Her condition continued to deteriorate. On January 28th her parents took her in again. This time Loveness was given oxygen therapy. However, as it would happen with such an advanced and uncontrolled case of DKA, Loveless ultimately lost consciousness, slipped into a coma and died.
While we do not know anything more about the specifics of Loveness’ experiences at home or in her local medical facilities, I continue to think that if she had been a patient at the renowned Naomi Berrie Diabetes Center at Columbia in New York City (where our daughter is now a patient) and if she had access to modern medicine and supplies (e.g. long- and fast-acting insulin, blood glucose test kits and subcutaneous monitors) and if her parents had received critical education about how to help manage her disease, perhaps she would still be alive today. And just maybe Loveness would have grown up to achieve her dream of becoming a doctor who would care for children with diabetes, like herself. I wonder.
Beatus Kiwale positions his daughter’s cross at her gravesite during her funeral ceremony.
NOTE: Type 1 Diabetics are dependent exclusively on insulin for survival. Insulin, discovered nearly 100 years ago, is manufactured by such drug makers as Sanofi, Eli Lilly and Novo Nordisk. Globally insulin is being rationed and prices have been raised 600% in the past 15 years. According to the World Health Organization, only half of people worldwide who require insulin are able to access it do to a lack of affordability and availability.* #insulin4all