Julie Kinneberg’s gut was telling her something was terribly wrong with her 10-year-old daughter.
It all started days earlier with Hannah drinking a lot of water and losing weight because her stomach hurt too much to eat. Doctors first diagnosed a viral bug and when she didn’t improve, she was diagnosed with strep throat, although a throat culture was not performed.
Hannah continued to lose weight. At 11 p.m. on Sept. 5, 2012, Hannah started vomiting. A few hours later, Julie and Aaron rushed their daughter to the ER in Grand Forks. Aaron carried Hannah who was now too weak to walk. In all, Hannah had lost 12 pounds since “coming down with the flu.”
Unbeknownst to Julie and Aaron, their daughter’s blood sugar level had soared to 800—nearly eight times the normal range. Hannah was dangerously close to slipping into a coma.
Julie and Aaron felt “blown away” when the doctor informed them that Hannah had Type 1 diabetes, a condition in which the body no longer produces insulin. While the cause of the disease remains a mystery, insulin injections are needed for survival.
Let’s learn this
From day 1, the Kinnenbergs adopted the attitude of “it is what it is” and “let’s learn this!” During the three-day hospital stay in Grand Forks, Julie and Hannah learned about the disease and how to do insulin injections. “She was a trooper, she really was,” Julie says.
“It was like coming home with a new baby,” Julie says. “It was a whole new world. They send you home with a book as thick as a Bible.”
In addition to working with a diabetes educator, Julie and Aaron did their own research online. Julie connected with a 21-year-old Grand Forks woman who was diagnosed with Type 1 when she was about Hannah’s age.
The world of type 1 diabetes (formerly known as juvenile diabetes or insulin-dependent diabetes) can turn school lunches, birthday parties and sports into challenges to monitor and master. Even a slight change in the school menu could affect Hannah’s blood sugar.
“I am her biggest advocate,” Julie says. “I made it known that she has Type 1. If she needs candy or a juice box, give it to her.” If Hannah’s blood sugar drops too low, she needs to quickly consume carbohydrates.
The whole family, including Isaac, 9, and Abbey, 7, practiced their math skills to figure out the insulin-to-carbohydrate ratio required to determine how much insulin Hannah needed.
Meal preparation took on a new level of importance as Julie wanted Hannah’s blood sugar to be perfect. Through trial and error, they learned which food would cause a spike. “Nothing is off limits. If you want a caramel roll, it’s OK. You can cover it with insulin. I want her to be a child,” Julie says.
Hannah has not let Type 1 slow her down. Active in student council, Hannah also plays soccer and swims like a fish. Hannah’s artistic side shines through in playing guitar and creating art. She sews clothing and perhaps someday will design fashion-savvy cases for diabetes supplies, unlike the camouflage one she received in the hospital. “I would rather have diabetes than a nut allergy,” Hannah says.
Hannah became a role model for her classmates, teaching them about her disease and creating games with friends on how to count carbs. Hannah attends birthday parties and drinks pop just like any other kid—only her choice is now Diet Sprite.
Since her hospital discharge, Hannah has handled her own injections. However, they became increasingly painful due to scar tissue. Her doctors recommended an insulin pump to address that and other concerns.
The Kinnebergs live in Grand Forks and have Blue Cross Blue Shield of North Dakota (BCBSND) health coverage. “Insulin pumps require lots of education and responsibility for the patient. That’s why we worked with Hannah and Julie to make sure the pump was the right fit through the prior approval process,” says Kirsten, who works as BCBSND’s medical management review coordinator.
“The pump is just a helper,” Kirsten explains, “Hannah still needs to be in control of her health—what she eats and drinks and her activity level.”
In April 2014, Hannah received an insulin pump, which she proudly wears. In fact, you could easily mistake it for a cell phone.
“The pump is uber fantastic,” Hannah says. The pump releases a steady flow of insulin throughout the day. At mealtime, Hannah tells the pump her blood sugar and how many carbs she will eat. The pump calculates the amount of insulin she needs. When she plays sports, the pump will also adjust the flow based on her activity level.
Camp Sioux is a highlight of the summer for the Kinnebergs. The camp gives children with diabetes an opportunity to have fun. The staff is well trained with diabetes. “We all get a week off from thinking about diabetes,” Julie says.
The Kinnebergs participated in the Step Out: Walk to Stop Diabetes event in Grand Forks as Team Hannah in October 2013 and ranked in the top five for fundraising.
Know the warning signs
Julie wants everyone to know the symptoms of Type 1 diabetes in children because they can develop quickly over a period of weeks.
- Increased thirst and frequent urination
- Extreme hunger
- Weight loss
- Irritability or unusual behavior
- Blurred vision
- Yeast infection
And if you’re a parent who has just learned your child has Type 1 diabetes, Julie offers this encouragement: “It gets easier. Anything gets easier with time, it’s not the end of the world that at first it seems like,” Julie says.
The Kinnebergs are now living their new normal. “Don’t be afraid to ask questions and get help,” Julie says.
“Diabetes is a piece of me, but not the whole picture,” Hannah says.
Denise Pinkney is an editor in the Communications department at Blue Cross Blue Shield of North Dakota.