A Life-Saving Decision—Part 1
Editor’s Note: A version of this article first appeared in Diabetes Wellness magazine, published by Diabetes NZ. Beyond Type 1 is partnering with Diabetes NZ for the Kiwi Takeover week!
Our story starts in Thailand, in January 2016, on the verge of a near-catastrophic decision to go to sea. At the time our son Braca, aged 4, was showing signs of increasing illness but we were unable to identify the cause. As anyone who has experienced diabetes knows, the symptoms slowly creep up on you.
At first there was increased thirst and increased urination, understandable in a move to the tropics. Then he showed signs of decreased appetite, but young children are notorious for being picky eaters. Next he started to become lethargic and showed little interest in normal social activity which we interpreted as boredom, understandable with a change in environment. Realising something was going on, either physical or emotional, I took him to the health clinic and the clinician diagnosed him with vitamin deficiency. We got a small box of multi-vitamins. But things started to get worse. He began bed-wetting, sleeping during the day, refusing meals altogether; things weren’t right. I took him to the international hospital and the physician diagnosed him with throat ulcers and constipation. “One week and he will be back to normal,” the doctor promised. We left with an enema and a prescription for oral thrush.
Meanwhile we continued to prepare for our season ahead, a year-long voyage that would take us 12,000 miles across the Indian Ocean. Provisions were fully stocked, a multitude of boat maintenance requirements ticked off the list, 850 litres of diesel and 1400 litres of water sat in our tanks. The boat was set to go, and so were we. Ahead lay the colours of Sri Lanka, the aquamarine necklace of the Maldives, the isolation of Chagos and the challenges of Africa. After all the pressure of constant work on the boat and concern for Braca, I felt like leaning out over the pulpit with arms reaching out to the sea and yelling at the top of my lungs, “Indian Ocean, thanks for waiting. We are finally on our way!”
We cleared customs from Thailand on 10 January 2016 after getting the green light from the physician and sailed to our departure point. Still, I had a nagging feeling that things weren’t right. The evening before departure we wandered around a local carnival, trying to get into the festive spirit but Braca kept dragging his heels and complaining that his bones hurt too much to walk.
As we shouldered him through the crowd, apathetic and lethargic, neither of us felt confident that his condition matched his diagnosis. Then things began to spiral. We were half way through his meds but he was still moping around and looking miserable. During dinner, he vomited violently at a stall-side market. We whisked him back to the boat, tucked him into bed and immediately logged onto the internet. Lethargy. Weight loss. Increased thirst. Increased urination. None of his symptoms matched the Thai doctor’s diagnosis. What we did come up with, however, was unimaginable: Addison’s disease, depression, diabetes, or cancer. We began to question the doctor’s diagnosis and in a defining moment we turned back from the sea. It was a decision that probably saved our son’s life.
At first light we pulled up anchor and raced back to Phuket. During the night Braca had slipped into a heavy, rhythmic breathing pattern unlike anything I’d witnessed before and I was manic with fear. Having already cleared out of Thailand we were now illegally back in it, but we disregarded customs protocol and raced into the paediatric department at Bangkok Hospital, in Phuket. The doctor agreed with our concerns—weight loss, vomiting and rapid breathing were not signs of a standard oral infection, nor was the hyperventilation or dehydration that he was now expressing. Braca was immediately whisked into the intensive care unit and dropped into a flurry of drips, drugs and needles. Our son was soon diagnosed with type 1 diabetes and in a critical condition. With blood glucose levels sky-rocketing and severe ketoacidosis, he was at the final stage before his system would shut down.
“Without sufficient insulin your son’s body has been unable to process sugars and he has been burning fat to survive. As a result, the ketone waste has been acidifying his blood and if untreated, he will quickly go into a diabetic coma. People can die from ketoacidosis,” the doctor told us.
Through a thick mist of shock and disbelief, we numbly fell into an alternate universe, vaguely aware that our plans, dreams and lifestyle had been dashed on the rocks of an incurable disease. Four days in intensive care with a four-year-old is one of the saddest, scariest experiences any parent can go through. I sat at his bedside and watched him sleep for hours on end, an enthusiastic, energetic little boy zapped of all his spunk and spirit. Trails of tubing spiraled from his body, hooked up to a complex assortment of beeping and blinking machines.
At the same time, it was a relief to be in the hands of medical experts and under proper care after the dizzying weeks of confusion and helplessness. Neither of us had imagined that he had such a serious illness; we had scoffed at the diagnosis that our online research predicted. I remember looking at my husband and saying, “Surely none of this applies to our son!” We never imagined the worst, but it seemed the worst was now upon us.
Learn m ore about Beyond Type 1’s Kiwi Takeover.
