Colorado Springs family adapts to reality of Type 1 diabetes as, one after one, children are diagnosed
It was a cold, wet California winter and Julie Hayes, her husband, Bubba, and their five kids all were laid low by a nasty stomach virus. When a week went by and 3-year-old Ashley hadn't rallied like her twin sister and the rest of the family, Hayes started to worry. The toddler was wetting the bed, which she hadn't done in at least a year, and though she ate nonstop, never seemed to get full. She'd sleep half the day and wake exhausted.
Hayes explained the examples of uncharacteristic behavior to the emergency room doctor, who peered into Ashley's eyes, had her stick out her tongue, and asked if diabetes ran in the family.
"I looked at him and said, 'I don't even know what diabetes is," Hayes said.
That, and life as she knew it, was about to change.
Over the following eight years, three more of her children would be diagnosed with Type 1 diabetes, a scenario that - even among families with a history of the disease - defies medical odds and, in many ways, illustrates the mysteries at the heart of genetic dynamics.
"I can tell you that the great majority of families have only one patient. Maybe 10 percent have two patients (and) there's just a handful of families with more than two," said Dr. Robert Slover, the Hayeses' physician and director of pediatrics at the Barbara Davis Center for Diabetes at the University of Colorado Anschutz Medical Campus in Aurora. "That is an extremely unusual situation to have it happen to four children in a family."
For people with Type 1, formerly mislabeled "juvenile" diabetes, something - often a virus - kicks off a faulty immune system response that causes the body to attack the cells that produce the insulin needed to break down dietary carbohydrates and regulate blood sugar. As those cells die, the internal insulin machine becomes more and more compromised and eventually ceases to function.
"We are not exactly sure why the autoimmune process gets started, but the result is clear: The body turns on its own immune system to fight some common virus or agent and that destruction spills over," said Slover, whose center is home to one of the world's larger and more preeminent programs specializing in Type 1 diabetes research and care. "When that remaining group of cells shuts down, you go from maybe having enough (insulin) to be OK to not enough and having all the symptoms of diabetes."
A complex disease
As researchers stalk a cure and technological revolutions make management easier for those with the disease, the "why" of diabetes often remains elusive, the outcome of a complex equation and moving parts - genetic legacy and environmental influences - that, for now, can be answered only in theory.
"We know that people inherit a predisposition to the disease, then something in the environment triggers it ... but most who are at risk do not get diabetes," Slover said.
In people with a genetic risk of autoimmune ailments, research has identified a handful of factors that seem to affect the odds of them developing the disease, which emerges more often in winter and is more common in places with cold climates. Early diet may also play a role, as the disease is less common in people who were breastfed and who began eating solid foods at later ages. And though the evidence is more anecdotal than empirical, the increase in autoimmune diseases may have something to do with First World lifestyles, Slover said.
"In a less-sanitary America, there was a lot more exposure to animals, to foreign proteins and diseases, and people seemed to have almost a natural immunization," he said. "Statistics show that poorer nations that are less sanitary have a lower rate of developing Type 1 and other autoimmune diseases."
In the Hayeses' case, though, theories and statistics fall short.
"If a couple with the same genes had the same number of children, the odds are that most of the children wouldn't get all those same genes" that lead to the development of Type 1, Slover said. "The logic is backward - because it happened, it follows that the children must have inherited the predisposition."
One thing Slover can say for certain is diabetes, and autoimmune diseases in general, are on the rise across the developed world. Over the past two decades, Type 1 diagnoses have increased at an annual rate of between 3 and 4 percent.
"Last year, we saw 450 newly diagnosed children. Ten years ago, it would have been more common to see 250," Slover said, adding that he's seen the greatest increase among toddlers and those over age 20, who today represent almost half of patients. "In pediatric populations, we used to talk about something of a peak in early adolescence - ages 7 to 13 - but these days I don't think that stands up."
Before insulin was discovered in 1921, diabetes had a grim prognosis. Most sufferers died in infancy or soon after manifesting symptoms; for those who didn't, a no-carb, starvation-level diet and rigorous exercise might buy an extra year. Today, pharmaceutical insulin is a miracle drug that allows an estimated 1.25 millions Americans to live out their otherwise natural clocks, so long as they adhere to a strict regimen of blood testing, injections and constant vigilance.
For a "D-mom" of four, it means life at DEFCON 2.
"You have to learn how to use insulin and regulate blood sugar when it's normally something your body does without you even thinking," said Hayes. "It makes you very nervous - can you even take care of your child?'"
On the ground, her and her husband's long-shot "bad collision of genes" is only vague context and background noise.
"Each child, each individual, this is their whole life," she said. "Each time ... with each diagnosis ... you're devastated all over again."
A year after Ashley's diagnosis, the Hayes family was still adjusting to the new fulcrum of diabetes when her identical twin, Emily, began to exhibit similar symptoms.
She "just had this look," said Julie Hayes, who told her daughter she'd like to poke her finger, "like Ashley has to."
That evening, she called a family meeting to break the news. Ashley, who knew what it was like to have diabetes, immediately burst into tears; Emily's reaction, however, struck her mother as "kind of comical."
She was "just laughing and smiling and jumping up and down. Like, she got to be like her sister now," said Hayes, whose family moved to Colorado Springs in 2006. "It's terrible for them both to have it, but they have each other. It gave them a teammate and partner in diabetes, so it kind of seemed like it was meant to be."
The reception wasn't so enthusiastic when daughter Melanie was diagnosed, at age 11, after Hayes noticed telltale signs, such as extreme thirst, that her daughter's internal glucose regulation system was shutting down.
By the time McGuire was 14 and came downstairs complaining of feeling unwell and worried about his blood sugar, the hallmarks and lingo of diabetes were household knowledge. At the time, though, Mom chalked the complaint up to malingering. There was no way she had another child with Type 1.
"I was like, 'OK, whatever. Do your test, but as soon as you're done you're going to school,'" she said.
As parents to one, then two, then four children with Type 1 diabetes, Julie and Bubba Hayes learned to make do on a patchwork of sleep. Julie spent nights haunting the halls with a glass of juice and glucose monitor, poking fingers and checking blood sugar as her children slept. The kids got used to it; sometimes, they barely woke.
By the time Ashley and Emily were in their early teens and making a name for themselves on the bicycle motocross circuit, their mother thought everyone had a "pretty good handle" on diabetes. The twins, Melanie and McGuire all were on the insulin pump and had proven good stewards of their numbers. If they were feeling low at night, when the risk of blood sugar bottoming out is greatest, they'd wake up Mom so she could pour them some juice and tuck them back into bed.
In the fall of 2015, though, after a series of nights during which her blood sugar dropped to dangerous levels, daughter Emily had a hypoglycemic seizure.
"She was seizing and blue. I'd never experienced anything so scary in my whole life. Ashley was there, literally screaming her sister's name," said Hayes, who called for an ambulance to administer the life-saving injection of Glucagon, a substance that works quickly to raise blood sugar levels.
Hayes felt the old panic of uncertainty about her role, as parent - and sentry.
"It's a reality that people do die from this disease, from low blood sugar, and it happens mostly when they're sleeping," Hayes said. "Diabetes is so much scarier than we ever thought it was."
A better routine
Adolescence can be especially tough when compounded with the challenges of diabetes.
"Typically, worldwide, diabetes is hardest in the teenage years, not because teens are uncooperative but because they're growing and dealing with hormonal changes and that can be difficult," Slover said.
Today, all the Hayes children are teens except the oldest, 21-year-old Aubrey, who does not have diabetes (but, said Slover, remains at increased risk). New innovations play a vital part in managing day-to-day health.
After Emily's seizure, all began using a Dexcom continuous glucose monitoring system that keeps track of numbers using a subdermal sensor the size of two strands of hair and a 2-inch transmitter that can be worn for up to a week. In fact, the teens participated in trial research that helped usher the technology to federal approval late last year.
"Julie's incredible, and her interest in helping her own children - and helping us get a handle on that (diabetes in adolescence) - has been wonderful," said Slover, who continues to meet quarterly with the teens. "We owe a big debt of gratitude to all our patients helping us with that research."
With the new technology, rather than multiple finger-sticks each day the Hayes children need only test their blood sugar in the morning and at night, before bed, to calibrate the device. Results are transmitted to an iPhone app that issues alerts if blood sugar begins to move into critical ranges, low or high.
"You get a lot of alarms going off if it hits that point," Bubba Hayes said.
Not only does the technology help the Hayeses sleep more seamlessly, a feature allowing long-term tracking of glucose numbers has encouraged the children to improve their hemoglobin A1C, a measurement of blood sugar levels over a period of time.
The new setup expands the safety net for health maintenance into the digital realm. Users can chose up to five followers who also receive live data from their transmitter via a private social media app.
Seventeen-year-old Melanie Hayes' Dexcom network includes her mother, father, big sister and two best friends. "If I'm even slightly high, I start getting texts," she said. "My friend David will send me a text with an emoji for up or down. If I'm down, he'll say 'Hey, drink a juice.' That's really helpful."
Contact Stephanie Earls: 636-0364