The first thing Mallory Rogers noticed was that she couldn’t keep a dry diaper on her daughter.
She would change Addie and then 10 minutes later, she’d have to do it again. Six diapers for her 2-year-old every hour, which felt like some kind of Guinness World Record for moms.
Rogers thought maybe it was a urinary tract infection, and the on-call pediatrician agreed. So she filled sippy cups with cranberry juice, which Addie gulped down. But it didn’t seem to help.
Then Rogers and her husband, Andrew Waibel, Addie’s dad, noticed that Addie seemed to be dropping weight. They wondered about a growth spurt, but that didn’t make sense when her princess pajamas were fitting looser than before.
“We could see her ribs when she would lay down; we could see all of them,” Waibel said.
The Utah parents were concerned and confused. Addie had COVID-19 about a week before that, at the end of August, likely catching it at day care. But she recovered from the coughing fairly quickly. Now it was September.
Rogers and Waibel called the pediatrician’s office again. This time, they were told to bring Addie in for a checkup. Within an hour of that, they were driving to the emergency room at Intermountain Primary Children’s Hospital.
The first urine test by her pediatrician had showed Addie’s blood sugar at 350 milligrams per decilitre of her blood, written as mg/dL. After the 30-minute car ride to the ER, it spiked to 550. The highest it should be for her age is about 180.
At the hospital, Addie was diagnosed with Type 1 diabetes, which explained the excessive thirst and urination and the weight loss. While those are classic symptoms for someone born with the disease, it was a mystery as to how Addie became diabetic.
Doctors said they weren’t sure exactly how, but they believed the diabetes was triggered by the coronavirus. And like other children who have unexpectedly been diagnosed with diabetes after an infection with COVID-19, it would be something Addie was going to have for the rest of her life.
‘All we have are theories’
When Addie and her parents got to the hospital, they were met by Dr. Dania Al-Hamad. Al-Hamad has been a pediatric endocrinologist at Primary Children’s for the past four years, after doing two years of study there. Over the past year, she’s seen a steep increase in the number of kids like Addie developing diabetes.
In 2021, there was a 20% jump in the number of children diagnosed with diabetes over 2020, she said. The hospital diagnosed 385 new cases in kids, up from 305 the year before. It’s never before gone above 350 cases in a year.
Al-Hamad expects 2022 to go even higher. And she says the link to the pandemic is undeniable.
The rooms at Primary Children’s have been full of kids who were there a few weeks or a few months earlier with COVID-19 and returned after developing symptoms of diabetes. It’s so common that Al-Hamad now asks patients testing with high blood sugar if they had the virus recently.
What’s especially strange is that patients are experiencing both Type 1 and Type 2 of the disease.
In Type 1, a person’s pancreas — which regulates blood sugar — produces little or no insulin. Type 1 is generally genetic, but it’s also an autoimmune disease, Al-Hamad said. In Type 2 diabetes, generally, the pancreas also is not producing enough insulin, and the cells in the body become resistant to it.
“The virus doesn’t appear to differentiate, which is so odd,” Al-Hamad said. “We don’t totally know what’s going on, what’s causing this and why kids seem to be affected more.”
Some viruses have been known to trigger Type 1 diabetes, Al-Hamad said. But with COVID-19, doctors don’t know the mechanism driving that — it doesn’t seem to be operating like other viruses. And the Type 2 cases are particularly confounding.
“Right now, all we have are theories,” Al-Hamad said.
And it leaves parents, like Rogers and Waibel, with more questions than answers.
Waibel also tested positive for COVID-19 shortly after Addie did. And he was more susceptible, in many ways, to long-haul symptoms. The 27-year-old father had recently finished his recovery from Hodgkin’s lymphoma, a cancer that attacks the immune system, after going through radiation and chemotherapy. And after months of being careful not to catch the virus — only going into grocery stores and work — it hit him hard.
He was unable to climb a flight of stairs without taking a break in the middle, unable to walk anywhere without an inhaler and unable to hold his daughter for any length of time. He was bedridden on a little air mattress in his office for weeks, and he continued to have symptoms for months.
So why was it his daughter was now in the hospital with a lifelong impact from COVID-19?
Rogers, also 27, went through the same blame spiral. She never tested positive for the coronavirus, but when she was pregnant with Addie she had gestational diabetes, which she managed by watching what she ate. And a few of her family members have Type 2 diabetes.
Should she have somehow known that Addie would be at risk? Was there something she should have done differently?
Both parents, who worked at the time, wondered, too, if they should have never enrolled Addie at day care where she caught the virus.
“It’s just not fair,” Rogers said. “I want to protect my little girl.”
All she can think about was how COVID-19 barely impacted Addie. The toddler was fussy and coughed but that was about it. Her symptoms have continued to be worse with diabetes than with the virus. She was hospitalized a second time in January when her blood sugar plummeted.
A study from the CDC
Al-Hamad said part of what doctors are looking at is why kids who had COVID-19 show up in hospitals in more acute, dire stages of diabetes than other patients who are newly diagnosed with the disease.
Like Addie, these kids have blood sugar levels that are skyrocketing and some are in diabetic ketoacidosis, or DKA — a life-threatening complication of diabetes when a person’s blood sugar is too high for too long.
“More kids are presenting in DKA,” said Dr. Vandana Raman, division chief for the pediatric endocrinology and diabetes team at Primary Children’s, which includes Al-Hamad. “They’re definitely sicker.”
With diabetic ketoacidosis, kids present with vomiting and an altered mental status. And it can be fatal.
It’s another part of the mystery with COVID and diabetes: Why does it seem like there is less time to intervene in these cases?
Rogers said she’s glad she and Waibel caught Addie’s case fairly early. Al-Hamad calls them lucky. She advises parents to now watch carefully for symptoms of diabetes after their kids are sick with the virus.
After Addie’s diagnosis, researchers at the Centers for Disease Control and Prevention came out with a study this spring linking diabetes and COVID-19. While the acknowledgment has brought some comfort to Rogers, the paper still doesn’t offer clues of what’s going on. It just observes the connection.
The research finds that adults and children who recovered from COVID-19 have a 40% higher chance of developing diabetes than those who weren’t infected. The authors say that means, overall, that 1% of those who got the virus will be diagnosed with diabetes who otherwise wouldn’t be — that’s millions of cases worldwide. And the complication is more common in kids.
In Utah, which has a younger population than most states, that means there will be a higher proportion of cases.
The study mostly found Type 2 diabetes cases, which can be associated with less healthy eating and exercise. However, those factors don’t entirely explain the connection here, the authors said, even if people developed poor habits during lockdowns and isolations. They also identified the possibility of a new type of diabetes, where cells mistakenly raise blood sugar rather than lower it.
The results come among other research on the long-term impacts of COVID-19, including heightened heart attack risks, fatigue and cognitive slowness (or “brain fog”).
With the coronavirus being so new and the impacts just beginning to take shape, many of the causes behind those concerns — like the diabetes connection — are unknown.
Al-Hamad and Raman have been approved to have their patients counted in a national registry and database for diabetes and the coronavirus for those younger than 18 years old.
Al-Hamad said there are several possibilities for how the virus triggers diabetes.
One of those is that it targets the cells in the pancreas, destroying them until it stops making insulin. Another is that COVID-19 causes such inflammation in the body that the pancreas just shuts down.
Learning how it attacks the body could give doctors a better sense of who is susceptible.
A 6-year-old’s case
Mike and Kandra Steele started noticing the symptoms in their youngest daughter about three months after she had COVID-19.
Lisa, 6 years old, would go through several Pull-Ups in an hour during the day — which were just meant to be a backup — and soak through them and her sheets at night. Her breath smelled funny, almost sweet, like she’d inhaled an entire bag of candy. At the same time, she was losing weight.
Mike had heard about the connection between diabetes and the coronavirus on Facebook when the CDC study came out a month earlier, but he initially brushed it off and forgot about it. Kandra, a pediatric nurse practitioner, also didn’t immediately think the symptoms pointed to that. Like Rogers and Waibel, she wondered about a growth spurt.
But when Lisa came to her saying, “Mommy, I feel weird. My head is weird,” Kandra decided they should take her to a doctor.
The Utah family lives in Brazil, where Mike is on a military assignment, and getting an appointment was tricky. When they got in, the staff started with a urine test, like Addie’s pediatrician had done.
As a nurse, Kandra has looked at thousands of urinalysis strips through the years. When she saw Lisa’s come back, she first thought there was an error. She’d never seen one that bright before.
The color indicated extremely high amounts of sugar.
Lisa’s glucose initially tested at 480 mg/dL. By the time they got to the hospital — as Kandra called Mike crying so much he thought they’d been in a car accident — it was at 700. At that level, kids can go into a coma.
Mike and Kandra’s two other kids, 13 and 9, both had COVID-19 but never showed any signs of diabetes. The parents also haven’t had complications from the virus. They were all fully vaccinated. And no one in the family has a history of diabetes.
The coronavirus was also pretty mild for all of them. Lisa had the sniffles for one day. After that, she seemed fine.
So why diabetes and why her? Why the three-month delay?
“COVID is the only connection we can make,” Mike Steele said. “But we just don’t know. We don’t know what’s happening, and that’s so hard as a parent.”
Al-Hamad said it’s unclear, too, why some kids are affected and others not, including in the same family. There’s so much unknown that doctors are trying to figure out.
Challenges with kids
Addie’s family spent three days and two nights at Primary Children’s last fall, learning how to check her blood sugar and give her insulin. Diabetes is a disease centered on management, and Addie is too young to manage it herself. So is Lisa.
That’s a large concern with more younger patients getting the disease, Al-Hamad said.
“It’s intense,” the doctor added. “It’s a lot for little kids. And there’s going to be more dealing with this.”
Rogers has joined several Facebook groups with other parents with kids with diabetes. She and Waibel count all carbs that Addie eats. For every 10 grams of carbs, she has to have one unit of insulin. Rogers jokes that she and her husband have had to become “walking calculators.”
She can rattle off how many carbs are in any given food: 27 grams in a banana, 22 in a piece of bread, nine in a clementine.
They also check Addie’s blood sugar throughout the day, and she wears a glucose monitor on her stomach. The 2-year-old calls it her “belly bot,” and they put stickers on it to dress it up — Addie usually picks princess Tiana or sometimes Belle, who reminds her of her mom.
They do finger pricks about every three hours, including throughout the night. Rogers and Waibel have an alarm set for 3 a.m. so they don’t forget. Addie hasn’t been approved for an insulin pump yet, so they have to rotate where they give her shots to prevent skin decay. Addie prefers it to go in her arms and freaks out if the injection goes anywhere else. It’s a challenge with five shots a day, on average.
“She’s so little that we can’t explain why all the sudden mom and dad are having to poke her with needles all the time,” Waibel said.
Rogers added, “As a mom, it feels so completely contrary to what I’m supposed to be doing, to have to hold her, pinch her and inject her as she stares at me with her sad blue eyes.”
“It’s just really rough,” Waibel said. They both sigh.
The Steeles have been going through the same challenges. Lisa has a sensor, but it’s not perfect. So they also monitor throughout the day, count calories and set alarms for 3 a.m. and 6 a.m.
“It’s not easy,” Mike said. “None of this is easy.”
‘Completely changed our lives’
In January, Addie was back in the hospital again, four months after her diabetes diagnosis. This time, her sugar levels dropped to the 50s. They’re supposed to be at 80 as a low.
She had gotten a stomach bug, again at day care, Rogers said, and was throwing up. But she refused to eat. No Sprite or Gatorade or orange juice would change her mind.
Rogers and Waibel had tried taking the 2-year-old to the emergency room, but she was so dehydrated that they couldn’t get an IV in her little arm. Addie was screaming, “I want to go home! Take me home! Home, home!”
They went to Primary Children’s again.
On the same 30-minute drive there as in September, Rogers and Waibel realized they couldn’t keep doing this.
They decided that Rogers would quit her data job to stay home with Addie. Kids with diabetes aren’t more likely to get sick; but if they do catch a virus, they’re more likely to get more sick. Having Addie in day care, where she was constantly exposed to germs, wasn’t working.
Waibel took a higher-paying job as a tax accountant in Florida to make it work. He moved out there in May. Rogers and Addie followed in June after the house sold.
“COVID and diabetes have just completely changed our lives,” Rogers said. “We had no idea this could even happen, no idea that Addie could get this because of the virus.”
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