Misdiagnosis Leads to Twin’s Tragic Death
Jefferson City, Missouri – In late December, 14-year-old twins, Hunter and Logan Chandler, were sick with what was thought to be the flu. The day after Christmas, their father TJ Chandler found Hunter unconscious on the floor of his bedroom. He was rushed to the emergency room at Women’s and Children’s Hospital in Columbia, Missouri. Hunter had slipped into a coma and was experiencing organ failure and swelling in his brain.
He was put on life support and tests revealed elevated levels of sugar in the blood. Medical professionals quickly realized this wasn’t just the flu. The official diagnosis: Diabetic ketoacidosis (DKA) from undiagnosed Type 1 diabetes.
DKA is a serious or life-threatening condition, often present with a diagnosis of Type 1 diabetes. Type 1 diabetes is an autoimmune disorder in which the body destroys its own insulin-producing cells in the pancreas. The result: the individual can no longer produce insulin, the hormone that regulates blood sugar.
Without insulin, sugar builds up in the blood because the body’s cells are unable to absorb that sugar. If the cells can’t access sugar (glucose), the body will instead break down fat and muscle for fuel. This process produces dangerous levels of ketones in the blood and an extreme chemical imbalance also known as DKA.
Hunter’s shocking diagnosis prompted the medical team to test his brother. Results revealed blood sugar readings at dangerously high levels. Logan was also diagnosed with Type 1 diabetes. Fortunately, Logan responded to treatment and survived, but for Hunter it was too late. DKA had already caused damage to vital organs in his body — damage that was irreversible. Six days later, on January 1, 2018, Hunter died.
A Type 1 diagnosis, which can occur at any age, means life-long dependence on insulin, constant monitoring and an increased risk of long-term complications. While it is a difficult disease to manage, it shouldn’t be a death sentence. Community members are asking how is it in our modern age of medicine that a boy can die from Type 1 diabetes while his twin lives.
“Because Hunter’s diagnosis did not come in time” said Sarah Lucas, the CEO of Beyond Type 1, an organization that is leading a national DKA awareness campaign. “Even in this age of unparalleled access to information, the majority of the population still does not understand Type 1 diabetes or understand that undiagnosed Type 1 diabetes is fatal.”
This is because the early warning signs of Type 1 diabetes are often written off as insignificant. These warning signs include:
- Unquenchable thirst
- Frequent urination
- Blurry vision
- Weight loss
When these early warning signs are missed, nausea, vomiting and rapid or labored breath set in. Therefore, a misdiagnosis of the flu, virus, UTI or just a growth spurt is too common in cases of undiagnosed Type 1 diabetes.
Amy Berendzen, a mother of a Type 1 teen in Missouri, says, “Type 1 diabetes is the last thing you think of with a healthy kid. It’s a quiet disease and not every child presents the same. If you even suspect Type 1, ask for a test.”
Amy explains that when her teenage son was diagnosed just last winter, it came as a complete shock. He had been presenting symptoms for months, such as extreme thirst, frequent urination, weight loss and phantom stomach pains. But he was a competitive wrestler who was working out frequently and he was a growing boy. There was also no family history of Type 1 diabetes.
Fortunately, Amy’s son’s symptoms were recognized in time by a primary care physician. His blood glucose was tested, which showed elevated sugar levels.
“We need to instill the warning signs and symptoms in the minds of both the parent and patient population, as well as the medical population,” says Sarah Lucas. “When people walk into a pediatrician’s office, GP’s or emergency room with these symptoms, we must ensure they’re not sent home without ruling out the possibility of Type 1 diabetes.”
A simple blood glucose test with a finger stick and glucometer can check for elevated levels of sugar in the blood. A less invasive and more common urine test strip can also check for excess sugar in the body. While a blood test is used for Type 1 diabetes diagnosis, both methods can indicate Type 1 diabetes.
“Hunter’s missed diagnosis had a tragic outcome, but his story is not uncommon,” says Lucas. “In the US, 40,000 adults and children are diagnosed with Type 1 diabetes each year and it’s estimated that 42% are in DKA at the time of diagnosis.”
Research also shows that an environmental trigger (such as a virus) can prompt an autoimmune attack. “A spike in the number of diagnoses of Type 1 diabetes around January is not unusual,” said Dr. Bert Bachrach, head of the Pediatric Diabetes Program at the University of Missouri. “You do see a lot of seasonal diagnoses,” he said. “Oftentimes, it’s been going on for years, but an illness tips it over (News Tribune).”
Just this past month, Bachrach says there’s been 12 new diagnoses in Springfield, Missouri. That same winter break, Hunter was one of four students from Jefferson City Public Schools who were diagnosed with the chronic disease. This means it’s more important than ever to be aware of symptoms during flu season. On one hand, Type 1 diabetes could be misdiagnosed as the flu. On the other hand, the flu could be the final trigger for the onset of Type 1 diabetes.
Beyond Type 1 has been working to solve this problem of late diagnosis or misdiagnosis. To date, their Warning Signs of Type 1 diabetes posters have been distributed to over 22,000 pediatricians’ offices in 18 states across the US. These posters have also been distributed throughout New Zealand. In partnership with the American Academy Pediatrics Association, this nonprofit is actively working to cover all states in the US, one of which is Missouri where they were recently approved.
“Despite the challenges that come with Type 1 management,” says Lucas, “Life can be endured. People with T1D do thrive and live beyond their diagnosis. The global population should take note of the warning signs, and parents and patients should demand regular screening. Medical professionals need to take the extra step when assessing patients and ensure their symptoms aren’t masking something greater. While we cannot prevent people from developing Type 1 diabetes (yet), we can stop people from dying due to a missed diagnosis.”
Support our DKA Campaign by sharing the Warning Signs in your community. Donate here to receive a pack of T1D Warning Signs stickers. Thank you for helping make this life-saving work possible.