My husband Sam and two oldest boys went on a long-awaited mountain biking adventure last month. Jaiden (now 10) and Casey (8) were eager to ride their new bikes, purchased with their own money, on the 6.2-mile loop of the Batsto Fire (Green) Trail. I felt some normalcy returning to our lives after 2 years of living with type 1 (T1) diabetes.
We prepare carefully when Casey engages in physical activities or excursions, as must all individuals with T1. Before he leaves the house, we make sure his insulin pump has enough insulin, his pump and cell phone are charged and communicating with the Dexcom continuous glucose monitor (CGM) attached to his body, he has an abundant emergency supply of glucose tablets in his tummy pack and his blood glucose (BG) is at a good level for the activity planned. Exercise lowers BG, so to prevent Casey’s BG from dropping dangerously low, which risks coma and even death, we also set his insulin pump to exercise mode to reduce the insulin delivered into his body. Upon arrival at Batsto, we reconfirmed everything.
I loved watching my husband and boys bike around the parking lot and then happily head down the trail. I sat outside Batsto State Park’s Visitor Center with our younger children, my dad and the diabetes supply case that follows us everywhere. I periodically checked Casey’s BG reading on my phone’s Dexcom Follow App.
My sense of normalcy was shattered in just over an hour. What I hadn’t appreciated is that you can’t count on routine precautions having their usual results in unfamiliar circumstances. In this case, results were horrifying.
Fifty minutes into their adventure, I saw Casey’s BG heading into hypoglycemia. Casey usually recognizes and treats it, but I phoned Sam for reassurance. His phone had no reception.
Nonetheless, I sent a text message. It would be twenty minutes before he could call and describe the nightmare unfolding.
The biking was fun but a bit challenging, as expected. At two miles Casey became frustrated. At 3 miles he said his BG was low. They stopped so he could eat a glucose tablet. Fear and shock rocked Sam when Casey reported there weren’t any in his tummy pack. Not having phone reception either, Sam knew Casey’s life was in his hands.
Casey was weak, sweaty, red and crying. He was fighting both hypoglycemia and fear. Sam tossed Casey’s bike aside. Casey was too weak to get and stay on Sam’s handlebars, so Sam traded his bike for Jaiden’s smaller kid’s bike. He pedaled furiously along the narrow, windy and hilly trail, gasping for air, lungs burning, legs on fire, with 70-pound Casey slumped on his handlebars and Jaiden keeping pace behind them on Sam’s bike.
At one point they strayed off the trail, losing precious minutes, with Casey slumping further as his BG kept dropping. Jaiden started to cry in fear. No one heard their calls for help. When Sam said they needed to stay strong for Casey, Jaiden immediately began reassuring and encouraging him. “You’re going to be OK.” “You’re doing great.” “We’ll find help.” Casey in turn affirmed Jaiden was always behind them. Sam finally felt his phone vibrate, indicating reception.
I answered Sam’s call, eager to hear about their trip, but heard fear in his voice instead. “Get help! Get help!” They were somewhere on the Green Trail fighting hypoglycemia without glucose tablets. Scared, I tried calling Hammonton police officer Dalton Scola because he had a similar T1 emergency while hunting alone. Then I dialed 911. I ran into the Visitors Center, thrusting my phone at the first person I saw, saying Casey’s life was in danger and the 911 operator needed the Center’s address. When I reached Officer Scola immediately afterwards, he assured me Casey would be OK. Two state park employees grabbed fruit snacks and went searching for Casey. Unable to reach Sam again, I remained in the dark for another forty minutes.
Twenty minutes after Sam’s call, my Dexcom app indicated Casey’s BG was rising out of hypoglycemia. I assumed—wrongly—that Sam found help. But something unseen was protecting Casey, who could feel his BG rising. While a relief to Sam, T1’s unpredictability kept him peddling madly another twenty minutes until they sighted a road through the trees. He called me with their location, and I rode with the police to retrieve Casey.
On the way, I told them I’d never seen Casey recover from hypoglycemia without treatment. One responded it was the body’s fight-or-flight reaction to emergencies. BG rises when circumstances cause great stress or fear, such as competing in an athletic competition or escaping a life-threatening situation. These flood the body with adrenaline and the stress hormone cortisol, which activate the hormone glucagon, which in turn causes the liver to release the glucose it stores as glycogen. This fear-induced chain reaction pulled Casey out of hypoglycemia and likewise gave his father and brother the extra strength and stamina to get him quickly to safety.
Their shared terror of Casey dying saved him, but it’s not the rescue T1 parents want or can count on. Our job is to prevent severe hypoglycemia. Why did our routine precautions fail? Most obvious in hindsight, they lacked a redundancy we’ve built into Casey’s daily routine: extra diabetes supplies within reach of all his caregivers. But Casey had no backup supplies on the Green Trail. We later discovered he had unknowingly dropped his bag of glucose tablets in the car. Visually double-checking is crucial. Hindsight also revealed that activities in unfamiliar places might pose hazards we rarely encounter anymore, such as no phone reception when miles from help. It had cut Casey off from his T1 medical safety net.
Hindsight is a gift to foresight. It teaches us how to better anticipate, manage or even neutralize hazards that imperil health, especially ones unique to T1 and other chronic conditions. Looking back, we also realized that Jaiden and Casey are even braver than we knew.
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.