Diabetes Is Not Forever: One Year Later

One year ago today we found out my six year old daughter had type 1 (childhood) diabetes. We had been at some organizational meetings in Europe in January, and as usual, a serious virus made the rounds among the kids. On the way home a security crisis canceled our flights and we were stuck in a layover city for several days. We were grateful for the unexpected rest, as my kids and wife were having the hardest time recovering from this strange virus, while I was strangely asymptomatic. Since then we’ve heard reports of Covid-19 being present in the country where our meetings were, even as early as January 2020. We can’t help but wonder if that’s what it was, since many of the symptoms line up.

We eventually made it made it back home and everyone slowly got healthy again. Or so we thought. After about a month we started noticing some strange things going on with our daughter. Two months after our trip the symptoms were increasing. She started wetting the bed at night when this had never before been a problem. She seemed to be looking unusually bony and skinny. She was waking up in the night extremely thirsty and and in the day eating and drinking large amounts, but without seeming to be able to quench her hunger or thirst. Her stomach started getting swollen and serious constipation developed. Eventually a rash appeared on her stomach and she started becoming lethargic and falling asleep in the middle of the floor at random times. Her normal state of 110% zest and energy was simply no longer there.

By this point we were several weeks into a strict Covid-19 lockdown. We were trying to treat our daughter’s symptoms, get remote medical advice, and wondering if being cooped up in the house without as much physical activity was partially to blame. But when I tried to have “gym class” at home, she was barely able to participate because of fatigue and discomfort. We were getting seriously worried when a doctor friend of our teammates suggested we check her blood sugar. Even though there was a history of diabetes in my wife’s family, we hadn’t thought to explore in this direction.

The police were mostly allowing civilian vehicles to drive around local neighborhoods, but not on the main city streets. So I was grateful that every local neighborhood in our corner of Central Asia contains several small but quality pharmacies – one of the ways the private sector here has responded to the broken government healthcare system.

It was a sunny late March afternoon when my daughter and I carefully drove to the far end of our neighborhood, making sure there weren’t new roadblocks and hoping that pharmacies would be open. As I recall, this was the first time she had to put on a mask to enter a building. She was really groggy and I remember encouraging her to try really hard not to fall asleep in the car. Deep down I was becoming afraid that falling asleep could be dangerous – though I couldn’t have said why.

We stopped in a local pharmacy and bought a blood testing kit, one of the kinds where you prick a finger and test a drop of blood through a special strip and small digital reader. The pharmacist conducted the test for us on the spot and as soon as the result showed, his brow furrowed. “They can’t show a blood sugar number if it’s above 400,” he said. “Let’s try again. If it’s still just showing ‘HIGH,’ then you’ll have to go to the hospital for a more detailed test.” Sure enough, the second test showed the same result. We would have to go to an ER – and that in the beginnings of the local Covid-19 outbreak.

I called my wife to update her that we might be out for a few more hours and to ask her to pray that the police would let us through the checkpoints. Thankfully, they did. All I had to do was tell them that my daughter was having a medical emergency and that we had to get to the hospital – fast. They would glance in the back seat, see how frail and sick she looked, and quickly wave us through. I was relieved it was this easy.

We arrived at an urgent care type of facility and they ran some blood tests. By this point I was really hoping that we would be able to find some answers, even if it meant something like diabetes. Some kind of mistake was made and the first round of tests didn’t include checking for the blood sugar level. They almost sent us home, but I somehow caught the mistake. As soon as they checked the blood sugar, the tone of the medical staff changed. They communicated that our daughter’s blood glucose level was extremely high and that they would have to transfer us to a private hospital with one of the only local endocrinologists who had experience treating children. While type 2 diabetes is everywhere here (blame the rice, chai, and baklava), type 1 is almost unheard of. Type 2 is usually diet-related and emerges in adults. Type 1 requires a genetic predisposition and emerges in children in response to the body’s immune system attacking a virus – and the body’s own pancreas by mistake. When this happens the part of the pancreas that makes insulin gets mortally wounded, and eventually stops producing insulin altogether.

The next couple hours were a strange mixture of sitting around waiting and medical staff urgently coming in and out. I could tell that it was serious, but the doctor was only willing to say that he thought it was likely diabetes. We were transferred by ambulance to a private hospital and taken up to the third floor. As we approached the doors of the ICU, they rushed my daughter through and I was abruptly informed that I wasn’t allowed to come inside. I pushed back that this wasn’t an option, that I had to be there alongside my six year old daughter who they now poking with various needles – and who was now beginning to shriek in terror. She has always hated shots with a passion. And now she couldn’t even see her dad. While the hospital staff insisted that non-staff are never allowed in the ICU, my daughter was fighting them hard enough and I argued just strong enough to be given temporary access and the assurance that I could stay in a room just outside the ICU door. I decided to take these concessions and to wait to push more later.

I was able to have a few moments comforting my daughter as the nursing stuff buzzed around us and attached various wires and tubes to her frail body. Soon a doctor came in and the staff insisted that it was time for me to leave, but that I could get access to her a little bit later. I was not comfortable with this arrangement at all, but I tried to stay calm, and tried somehow to help my daughter not panic. On the way out I managed to see the paperwork of her blood tests.

Blood glucose level was 786. Normal is 80-180.

I quickly sat down on the small couch in my room, just outside the ICU doors and googled what a 786 blood sugar level meant. What I found froze me in my tracks. Diabetic coma. And other terrifying possibilities. I knew that something very serious was going on, but it wasn’t until that moment that I realized just how close we had gotten to losing our daughter. Sitting by myself in that room a sense of desperation overcame me and I pleaded with God for my daughter’s life. I realized that our hasty goodbye in the ICU could have been the last time we saw one another.

I don’t remember how long it took for a doctor to come and update me on the situation. Much of that time was spent frantically praying and sending out texts for prayer. I was also talking to my wife by phone. She was understandably furious that they had not allowed me to stay by our daughter’s side. I tried to reassure her that I would keep pushing for regular access, but that we didn’t have very many options and that fighting at that point wouldn’t get us more.

Eventually a young doctor came in my room. He told me that my daughter was experiencing something called diabetic ketoacidosis, a condition where the body’s cells have been unable to process the “food” they need due to lack of insulin, so the body has been attacking and consuming itself. This was what accounted for all of the strange symptoms she had been experiencing. She definitely had new onset type 1 diabetes. But she was going to make it. They would work to stabilize her and safely bring her blood sugar levels down. We would need to stay in the hospital for a week or so.

“Don’t consider it an illness. Consider it a gift!” he said with a flourish as he made his way out the door. While thankful for the intent, I clenched my teeth at these parting words. Not the right time, doc, not the right time.

Through the timely intervention of the hospital staff and the prayers of God’s people, everything got easier from that point on. Our daughter stabilized, although it took three days or so for her blood sugar levels to be safely brought down below 300. As the mostly foreign hospital staff realized I could get my daughter calm enough for her shots and urine tests, they began to invite me into the ICU more and more, and eventually just gave me the door code so I could come in whenever I wanted to.

The first 48 hour shift nurse assigned to our daughter was an Indian gal, and one who was connected to our international church. Turns out one of the Filipino doctors at the hospital was a believing member of our church. Other Pakistani fellow members walked from their neighborhood to bring me home-cooked pratha and omelettes. The wife of one of our pastors sent me an Aeropress coffee maker and some ground coffee. Most of our team lived a little too far from the hospital to be able to walk there, but they walked groceries to my wife and other two kids at home, and provided childcare so that my wife could begin to visit the hospital once we acquired a special letter for the checkpoints. One single teammate could make it to the hospital by foot, and he even learned to boil eggs just so that he could fulfill that particular request. To this day my daughter raves about those boiled eggs. As her cells began to be able to absorb nutrients again, she began to eat like a full grown man!

After three nights, our daughter was allowed to move into my room. This was a cause for celebration. We began having dance parties to try to bring her sugar down and experimenting with the random diabetic-friendly food items we could get from nearby stores. Lots of nuts and cheese and cucumbers. Not so much rice and bread, which was mostly what the hospital food consisted of.

It became a strangely joyful time in that bright little hospital room that smelled like Pakistani food and coffee. My daughter seems to remember mostly the sweet parts of our surreal hospital stay and to not recall the many scary parts. I am incredibly grateful for this.

As best we can figure, that virus that hit our family back in January 2020 is likely what caused my daughter’s immune system to misfire and handicap her pancreas. This led to the development of the ketoacidosis. Apparently type 1 diabetes is much more common among those of Northern European and specifically Scandinavian descent. Turns out our DNA has more of that heritage than we knew at the time. We really should have known that this was a possibility for our kids, since my wife’s two younger sisters also have type 1. These sisters have proved to be wonderfully helpful aunts to my daughter since they can identify with her experience so well. The experience that my wife had growing up with her sisters’ diabetes is likely why we were able to so quickly get back to a kind of normalcy – and why we continue to feel so grateful at the kind of diabetes management now available. God should get more glory for insulin pumps and continuous glucose monitors (we use the Omnipod and Dexcomm G6). These devices, sadly not available in this country, are stunning in how much freedom they give kids with type 1 and their parents. A disease that would have been fatal in 1921 barely slows down my now seven-year-old in 2021. We were able to get set up with these devices during five months of medical leave in the middle of last year.

We look back at what happened a year ago and we thank God and shudder. It was hard. We will be lamenting the presence of this disease in our family for the rest of our lives. Yet we also rejoice at God’s particular kindness to us through this whole experience. From the medical advice that came just in time to catching the blood tests done wrong to the unexpected presence of believers in the hospital, God was very much communicating his care for us. And there are many more details of things like this that I haven’t mentioned because this post is long enough already.

One year ago we discovered our daughter’s type 1 diabetes. It hasn’t been easy. But now, twelve months later, we know more of the kindness and care of our God.

And diabetes is not forever.

“I wonder,” I mused to my wife the other day, “If in heaven the lame walk, and the blind see… do you think perhaps Jesus greets those who had type-1 diabetes with a giant ice cream sundae? ‘Welcome home! Your disease is no more. Here, have all the ice cream you can handle!”

Photo by Sebastian Coman Photography on Unsplash