A Sweet Girl in Ghana: Managing Type 1 Diabetes in Western Africa

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For many years my husband, children, and I traveled back and forth to Ghana from our home in New Jersey.  It gave our three children a chance to meet my husband’s Ghanaian family and to learn about life in another part of the world.  And while our children loved the trips to Ghana, when we made the decision to move here, I knew it wouldn’t be easy for them, and I knew it wouldn’t be easy for me.  I came from a world of shopping malls, movie theaters, and fast food.  And people who look like me – a tall, overly outspoken, sarcastic, cynical, middle-aged white woman – are not the norm in Ghana.

The kids adapted quickly.  They made friends easily, and I could hear the cadence in their voices changing to the melodic Ghanaian rhythm.  They played football under the African sun with local children who didn’t care whether or not they had shin guards or even shoes, a ball was all that mattered.  Alexandra, at seven and our youngest child, was as involved with sports as her older brothers were (and more fierce, if truth be told).  Living in a summer-like climate year round, the children were nearly always outside.

But then we began to notice dramatic changes in Alex.  Instead of her usual firecracker-like self, she was about as active as the doll she clutched.  She wouldn’t take a walk to the store (even for a treat), wasn’t willing to sit up and play Runescape on the computer and she didn’t want to play with her brothers.  She wouldn’t even fight with her brothers.

For what seemed like days on end she lay on the couch, watching DVDs or cartoons.  She got up for nothing and no one.  If you asked her a question, she’d look at you as if through a fog.  Simply put, she was lethargic.  I’d say that word again and again and again in the days that followed – it was the perfect word to describe her – though my husband hated it.  She had no energy, except to get up to pee, or to take another sachet of water from the fridge.  She had been like this for a week, maybe more; my husband pointed out to me the boniness of her spine. (Why had I not seen it earlier?)

I Googled lethargy and weight loss, and Alex’s other symptoms– frequent urination, unquenchable thirst.  I wished I hadn’t.  Diabetes, diabetes, diabetes.  It all pointed to one clear outcome, but I didn’t dare share it with my husband, Sylvester.  If it was diabetes, he needed to hear it from a doctor.

Ghana has a cash-and-carry medical system.  You can go to wherever you want, so long as you’ve got the cedis to pay the bill- up front, in most cases.  We went to Phillips Clinic, which was recommended by the U.S. Embassy staff.  We didn’t have to wait long to accomplish the preliminary stuff with the nurse, and in only a few minutes we joined the queue for the doctor.  Of course, during that time Alex had to pee.  I saved it in a cup, pretty certain that it was going to be necessary.  Alex thought it was funny – she’s got terrible aim.

We only needed to spend a few minutes with the doctor before he sent us to the lab across the hall.  They took our urine sample, poked her finger and drew some blood.  The technician showed me something (I know now it was a glucose meter); it read HI.  I don’t know how high her sugar was then, only that it was unreadable on the meter and her urine ketones were ++++.

The diagnosis came, diabetes mellitus, but not with certainty.  Being only a general practitioner, the doctor wasn’t able to treat Alex and he had to refer us elsewhere.  Pediatric endocrinology is not a specialty practiced in Ghana, and the next best thing to an expert was Dr. Lorna Awo Renner, the head of the children’s block at the Korle-Bu Teaching Hospital in Accra, the capital city.  So that’s where we headed.  But not until the next day.

For whatever reason (though I now believe that Ghanaian doctors tend to avoid “scaring” a patient), urgency was never voiced.  No explanation of how time was of the essence, or how quickly Alex’s condition could become critical given her high sugar level and the large ketones in her blood.  We went home to regroup.  In retrospect, we were very lucky the night was uneventful.

The next morning, unsure of where exactly we were headed, we made our way through Accra.  Have you ever been stuck in a traffic jam inside a major city?  Well, this is nothing like that.  Yes, there are too many cars and not enough roadways, but here there are also people who dart between the slow-moving cars.  They are known as hawkers, and they carry huge bowls atop their heads from which they sell water, plantain chips, candy, tissue boxes, exercise equipment, mouse traps, gum, ice cream, and more.

Private cars, taxis and local mini vans (called tro tros) inched slowly along, most with windows opened wide.  I watched passengers mop sweat from their faces while beckoning a pure water seller to come.  Some lucky individuals sat inside air conditioned splendor.  We were not among them; we endured the heat and the smell of fumes and the constant staring by the hawkers who were sure we’d buy something from them.

Nearly two hours after we set off from our home, we arrived at Korle-Bu, only 25 miles away. The elevator to Dr. Renner’s floor was not working.  (We’d later learn that it hardly ever worked.)  Alex looked at the steps and started to cry.  She couldn’t climb them, she said.  Sylvester picked her up in his arms like a baby and we walked up four flights.

Dr. Renner greeted us in the hallway.  She was a woman about my age (late 40s), dressed in a traditional wax-print outfit, neat as a pin and bustling with efficiency, professionalism and concern.   She told Sylvester to carry Alex upstairs to the nurses’ station in the children’s ward for a weigh-in.  She was only forty pounds, closer to the weight of a toddler than a seven-year-old girl.

Dr. Renner read the note from our doctor, and perhaps under the assumption we’d already been briefed on what to expect, told me to grab my purse and she’d show us where “we” would be staying.  “We?”  “Staying?”  I really should have Googled further.  I thought they’d give us some medicine and we’d be sent home.  I wasn’t alone in my naïveté.  My husband was also surprised (shocked was more like it) to learn Alex and I would be there for a few days.

As a private pay patient Alex would not have to stay in the regular children’s ward, so she was assigned to the Amenity Ward.  What set the Amenity Ward apart were curtains between the beds, a small refrigerator, a sink, and access to a private (locked) toilet and shower down the hallway.  What designated our area as a children’s area were the grotesquely disproportionate cartoon characters drawn on the wall.  There was nothing else that suggested that children would be cared for there; no toys, no children’s books, nothing.  The cost for the Amenity Ward was equivalent to about $8 per day.

While Alex and I waited for her bed to be readied, Sylvester had his own assignments.  First, he had to head to the main lab to pay for the blood work that Alex would need.  He’d pick up the empty vials so that a doctor could draw her blood (there was no way Alex could have walked to the lab, nearly 1/8th of a mile away).  Then he had to return the filled vials for analysis.  Eventually, we’d learn that Alex’s very first HbA1c was 14.7%.

Next, he was given a list of things he had to buy, immediately.  They included a glucose meter, glucose strips, insulin, syringes and saline. He had to find and buy everything, get it all back to me, then drive home, pack our belongings, bring them to us, and return home – all before Alex’s older brothers got home from school.  At Korle-Bu you must supply your own soap, shampoo, toilet paper, sheets, towels, and washcloths.  We also needed entertainment; my laptop with a single movie (The Wizard of Oz), some games, books, crayons, toys and a cell phone would have to suffice.  And we needed Simon, Alex’s doll.

While we waited for my husband to return with our things, the nurse came in to give Alex her first insulin injection.  The nurse offered me the syringe and vial, and I deferred on that injection, knowing that it wouldn’t ever be an option again.  “She’ll have to do this for the rest of her life” kept popping into my head.  I remember it was all I could do not to cry.

During our first night there, the Korle-Bu nurses came in every two hours to check Alex’s blood sugar on our glucose meter. (I learned later that they didn’t have a glucose meter in the ward.)  Every four hours they were there to give her more insulin.  Alex remained on a drip for 36 hours, dragging the IV pole with her down the hall to the bathroom.  She was only disconnected from the drip long enough to take a (cold water) bucket bath.

To get to the shower room we had to pass through the children’s ward, a large, ugly room fitted with a dozen cribs for the patients; the mothers (in most cases) slept on the floor beside the cribs. The first night, as we passed through to the bathroom, we were clearly an object of curiosity to the other mothers.  Surely, no obroni (white person) would be at Korle-Bu if she had a choice.  Eventually, though, they accepted me for what I was, a mother, just like them, taking care of her very sick child.

It was a long first night.  Alex’s glucose meter stopped saying HI but never budged below 600 mg/dl.  In my mind I kept returning to our conversation with Dr. Renner, “Her sugar level should be between 70 and 140.”  Was that even achievable?  I had to wonder.  After 12 hours it finally budged.  In fact, it did more than budge; at 3 a.m., it plummeted to 52 mg/dl. I called the nurse who asked if I had any candy?  A Mars Bar.  Would that work?  She “thought” so, so I woke up Alex and force-fed her a chocolate bar.

The next morning, ready or not, I had to begin learning to take care of my own daughter in a whole new way.  I read the instruction manual for the glucose meter, became comfortable with it, and checked her faithfully, on the schedule the doctor recommended.  I drew up the insulin through the syringe under the careful eye of the nurse and then injected my daughter.

As someone who’d undergone IVF treatment, I knew how to handle a syringe.  I thought I knew how to give an injection.  I thought wrong.  Injecting insulin is nothing like injecting Pergonal, which requires a wrist-flicking movement much like a professional dart player.  And the syringes are very different sizes.  I hurt Alex.  She cried.  I cried.

There was no one to help me figure out which foods were okay for Alex.  I gave her fresh pineapple from a street vendor – amazingly sweet and juicy – and her sugar skyrocketed.  The nurse yelled at me.   I had an internet connection so in the middle of the night I began to Google and I found Children With Diabetes.  I had so many questions.  Parents who understood my situation explained everything to me, about sugar-free foods and carbs, and about how insulin works.  I learned more from my new cyber friends, than the nurses (at Korle-Bu, anyway) will ever know.  All told, Alex (and I) spent five nights in the hospital, with my husband and Alex’s brothers coming every day to visit.  With the exception of a single visit to the hospital nutritionist, who  suggested restricting Alex’s diet in a way that she’d never have grown, the days were uneventful.  Time passed as we tried, not quite successfully, to stabilize Alex’s vastly fluctuating sugar levels.

The conditions in Korle-Bu, a government-owned hospital, are not nice, even in the Amenity Ward.  The sink water doesn’t always run – certainly it’s not drinkable, and I kept bottled water next to our bed.  During a heavy rainstorm late one night, the ceiling leaked in the hallway, creating a mini lake just outside the door to our room.  I had to walk through it to get to the nurses’ station.  The puddle was still there in the morning – no janitor on duty to clean it up.  I could hear conversations quite clearly taking place in the hallway because beside the door was a giant, screened window.  And the room was bright day and night, because the hallway lights were always lit.  Because Korle-Bu is a teaching hospital, the best in the country (even underfunded as it is), at any time of the day or night we might have a half dozen interns coming in to check on us, and asking questions.

By our final day in Korle-Bu I couldn’t wait to get out, for us to go home and figure it all out for ourselves.  The nurses really hadn’t done anything for us in the last two days, but they couldn’t discharge us because the Billing Office wasn’t open over the weekend.  And so we waited until Monday.  Finally, we got the bill, equivalent to $75.  With everything Alex had needed during those five days, we spent about $350 in total, the glucose meter (without strips) being the highest priced item at $100.

We’ve come a long, long way since Korle-Bu.  Alex has gone from being on Mixtard (now, no longer used) and Humulin R injections at diagnosis to twice-a-day injections of Humalog 70/30.  From there, with guidance from my cyber support group, I asked for Alex to be switched to an MDI regimen using Lantus and Humalog.

Not long after Alex’s diagnosis, Dr. Renner held a patient support group meeting.  Of 25 type 1 children in the room, Alex was only one of three with her own glucose meter.  I was shocked, but Dr. Renner confirmed that most parents in Ghana can’t afford to buy one, much less the expensive strips that are necessary to make it useful.

That meeting was eye-opening, and very humbling.  I had access to support channels outside of the country that gave me wisdom and courage.  I had money to buy what I needed to keep my daughter alive, but those families had nothing.  I was appalled, so I put out an appeal.  And the wonderful parents who make up the Children With Diabetes (CWD) community came through with donations of new glucose meters and strips, syringes, ketone strips, alcohol swabs, whatever they could spare.  All told, 25 goody bags were donated to Dr. Renner for her type 1 diabetes patients.

And thanks to the generosity of still more very kind people, Alex was given an insulin pump.  For the last 9 months, she has been pumping untethered, getting her bolus insulin through a gently used Animas 1250.  Soon, she’s going to be Pinging, thanks to the fundraising efforts of one very stubborn, very wonderful CWD mother who hated the idea that Alex didn’t have a back-up pump and might have to go back to MDI.

Regardless, whether on MDI or pumping, I consider Alex to be one of the luckiest kids in the world.  If she were born to other parents here in Ghana, she might not have seen her first anniversary with diabetes.  Now she’s approaching her third, and thriving.

 

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Courtney OliverScott K. Johnsonmaxine winerTonyBarbara Zigah Recent comment authors
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Courtney Oliver
Courtney Oliver

This is such an amazing story!! I am a type 1 insulin-dependent diabetic. I was diagnosed when I was 4 years old and am coming upon my 15-year anniversary with diabetes. I can still remember the feeling of lethargy in the weeks before my diagnosis. It was a rough journey but I made it through thanks to amazing support from my family. Barbara, you and your husband should be so proud of your daughter!! She is so tough and inspiring!!

Scott K. Johnson

What a magnificent story.  Thank you for sharing!  As so many others have said, it is very inspirational.  Love that last picture – she’s totally got her ferocity back! :-)

maxine winer
maxine winer

Alex is a lucky girl to have parents able to give her emotional and financial support. 

Tony
Tony

What a great story.  You and your family (especially Alex) are truly inspiring.  It is interesting to hear how different life is far from the US and just how lucky we are.  We take for granted many of the common things we often complain about.  I wish you and your family the best.

Bernard Farrell

Barbara, thank you for the harrowing story and sharing the pictures of your beautiful daughter. Are you still traveling to Ghana on a regular basis? Is there anything we could do to get supplies, or information or anything else that would help with the diabetes care in Ghana? I would be most interested in helping even in a small way.

Leanne King
Leanne King

Wow what a scary but enlightening story….as a mum with type 1 (since age 30)who has a daughter with type 1 (11years) I have always wondered how the kids in different parts in Africa get on with living with diabetes and it has always worried me. When I was in my 20’s I travelled through Africa and fell in love with the country and it has always bothered me that my daughter probably won’t ever be able to do that due to the nature of the disease….thankyou for sharing your story….we are so lucky in the western world to have… Read more »

Elizabeth Snouffer

This story really touched me, thank you.  Here in Hong Kong – a wealthy city by most standards and in other much less developed zones in SE Asia, most parents cannot afford test strips and this causes the biggest problem.  Insulin is distributed for free if patients qualify but it is literally a shot in the dark without knowing BS levels.  The HK Juvenile Diabetes Association (not affiliated with JDRF) fundraises every year to provide hundreds of parents and their children with the supplies they need.  It is a worthwhile effort and we have been successful at raising grants and… Read more »

Sherry

I can’t believe she was sent home after her initial diagnosis WITHOUT insulin! Scary stuff. Incredible story that makes me so very thankful for the medical care we have here in Canada. Amazing.

Connie
Connie

Like others have said, you’re amazing Barb. What a wonderful heart wrenching story!

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