High & Dry -
By Gretchen Boger-O’Bryan
For Bella, the weeks leading to her diagnosis were a mix of symptoms, each seemingly separate from the other. Among the most common? Insatiable thirst and countless trips to the bathroom.
Although both are often a first clue, the then-13-year-old of South Portland, Maine didn’t share with her parents all she was experiencing at the time. To be fair, many newly diagnosed diabetics and their families admit they were so focused on individual and seemingly random symptoms, many of which could be easily attributed to other causes or were just mere annoyances at first – thirst, for example – that the bigger picture was too far out of view.
For example, Bella’s stomach troubles – which included acid reflux and pain when she ate – had been attributed to school stressors likely causing anxiety. Given the difficulty eating the way she once had, weight loss wasn’t as glaring a red flag as one might think. Yet, over the course of a couple months, Bella’s thirst had remained, her stomach was still off and she was no longer feeling like herself. One day, as dehydration and fatigue took hold, a weakened Bella took a tumble down the stairs. For mom and dad, enough was enough. It was time to rely on the medical prowess of that ol’ parental gut instinct and call Bella’s doctor.
Good thing, says Bella. “The day my mom called, I slipped into a diabetic coma on the way to my appointment. Fortunately, my pediatrician recognized what was going on: I was in DKA (diabetic ketoacidosis).”
While piecing together seemingly random symptoms – thirst, stomach upset, feeling tired – would be impossible for those who’ve never heard of T1D, turns out that connecting the autoimmune-disease dots can be equally deceptive for those in the know. Case in point – not only does Bella’s uncle have Type 1 diabetes, he was living with her family at the time!
En route to Maine Medical Center’s Barbara Bush Children’s Hospital by ambulance, an
unconscious Bella would begin experiencing brain swelling and seizures. Once admitted into the medical center’s intensive care unit and seen by medical personnel, Bella’s parents were told what no one ever wants to hear about a loved one: Their daughter likely wouldn’t make it.
Today, nearly four years later, Bella can describe those moments – having defied the medical experts’ grim prognosis and waking from the coma to a nurse telling her she was diabetic – as if they were yesterday.
“I had no clue what was going on or why I was in the hospital. I was pretty out of it and
confused. The brain swelling made me very aggressive and irritable and I said some silly things. I told a nurse she was pretty, and even told a doctor I hated them!”
As for her first few days in the ICU, it was all needles and IVs. Bella recalls the doctors and nurses as “flying in and out of the room, pumping me with insulin and water. Everyone was very kind and loving toward me and my family, which was very helpful.”
Several days later Bella stepped down from the ICU into the children’s wing, and soon was giving herself insulin injections. All the while, her parents were being given guidance on their newest parental responsibility: helping Bella do the work for her pancreas.
Once released from the hospital and back in the comfort of her own home – which includes life alongside younger brother Jude – Bella says she took it nice and slow in getting back to her pre-diagnosis energy levels and eating patterns. “I’m grateful to have such amazing, supportive parents who held my hand every step of the way, and wonderful friends and family who provided more than I needed with cards, blankets, meals and visits.”
Despite the love and support, adjusting to her new reality those first few weeks was challenging. “Everything felt very new and unfamiliar. All the carb counting, injections, finger pricks, it was all very scary. My life had changed and I didn’t like it one bit. I cried to my parents every night that I hated my life and hated diabetes,” she says. Then adds, “It was a really depressing time. I was so mad at diabetes for ‘ruining’ my life.”
Still, despite the pause, process and painful pivot required of Bella in those early days, there were outside forces that required she push onward, like going back to school. “Oh, that was a challenge for sure! I was very quiet about my diabetes, and it was difficult. Everything was so new: dealing with school and diabetes every day, and with all the doctors’ appointments, too.”
Stay tuned for next week’s installment of Bella’s DiaStory, “The Lowdown.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.