Meet Kid Captain Hunter Mickelson
Hunter Mickelson’s parents knew their infant son wasn’t thriving, but local doctors couldn’t say why. A search for answers led them to University of Iowa Health Care Stead Family Children’s Hospital.
At just 6 months old, Hunter was diagnosed with an extremely rare condition called nephrogenic diabetes insipidus.
The genetic kidney disorder affects just 1 in 2.3 million people and can lead to severe dehydration if left untreated. The condition is unrelated to the more common diabetes, in which the body does not produce or properly use insulin.
Searching for answers
“He was full term,” Hunter’s mother, Brooke, says of his birth. “He screamed all the time. He cried all the time. He couldn’t nurse. We couldn’t get him to latch.”
They visited nursing specialists, nutritionists, and other medical experts, but were told “you just got a colicky one.”
“We knew something was wrong,” John says. “We just didn’t know what it was.”
About the same time, Hunter experienced an unrelated acid reflux issue “so anything he would consume oftentimes came back up,” Brooke says.
At 6 months old, Hunter was unable to gain weight. Brooke remembers calling to plead for more testing.
“I said, ‘Something’s not right, and I don’t know what else to do,’” she says, tearing up as she recalls their desperation. “That’s when they ran the full blood panel, and they said, ‘You need to go straight to the ER. His sodium levels are at a level where he’ll have a seizure if you don’t go.’”
‘Extreme circumstances’ with a rare disease
With her husband out of town, Brooke quickly found care for Hunter’s three older brothers and rushed her youngest son to their local hospital.
“They couldn’t find a vein in his arm because he was so small and he was so dehydrated,” she says, adding that they eventually were able to give Hunter an IV in his head. “They were treating the problem, but they didn’t know what it was or why he was so sick.”
Hunter was admitted to the hospital but discharged after two weeks with no treatment plan. His parents sought a consultation with the genetics department at Stead Family Children’s Hospital. After an appointment with the geneticist, Hunter was seen by pediatric gastroenterologist Eyad Hanna, MD, MME.
“Dr. Hanna examined Hunter and said, ‘We are admitting him right now.’” Brooke recalls. “He just looked at us and said, ‘We’ve got this under control. You can relax. We’re going to get him some help.’”
“We really didn’t have anyone who had a sense of urgency or was willing to take the next step up until that point,” John adds.
At one point during Hunter’s hospitalization at Iowa, Brooke was in a hallway when a helicopter flight crew entered the floor.
“I thought to myself, ‘I’d hate to be the parent of that kid they came in for. He must be really sick,’” she recalls. Brooke soon found out they were going to Hunter’s room.
“His veins at that point were so fragile,” she says, noting the crew was called in due to their high level of experience in finding a vein under extreme circumstances.
Hunter was diagnosed with the rare genetic kidney condition during his hospitalization, and received a blood transfusion, a central line to his heart, and a gastrostomy tube for nutrition.
John remembers the coordinated care and communication they witnessed with daily meetings with the care team.
“Brooke and I and everyone on the medical team would know what the plan was for that day and why,” he recalls. “We were able to witness and ask questions and understand it. We were participants in the meetings, so that felt really good.”
Moving toward disease management
After he was discharged, Hunter later experienced tachycardia, which is an increased heart rate, and went back to their local hospital, which was closer than Iowa City.
“We almost lost him there,” Brooke says, but his doctors in Iowa City were in communication with the local hospital, and Hunter made it through.
While there is no cure for nephrogenic diabetes insipidus, Hunter manages the condition through large intakes of water, even during the night, and twice-daily medication.
He can participate in sports and other activities if he stays hydrated, and he regularly returns to Stead Family Children’s Hospital for checkups.
With their positive experience, the Mickelsons along with the Phillips and Willis families, created the Iowa Wave Shirt, a nonprofit that supports patients at the children’s hospital. Hunter is proud to see people wearing Wave apparel because he knows it will benefit sick kids at Stead, according to his parents.
Now 9 years old and in fourth grade, Hunter enjoys a range of sports, including football, golf, and tennis, and he likes hanging out with his friends and older brothers.
“Without the care he received while he was admitted in 2015, and the ongoing treatment since, things would have turned out drastically and tragically different,” John says, noting Hunter’s treatment plan upon discharge was tailored to their family. “It was a holistic plan, and I feel like it was the best plan for us.”
“He’s handled his condition very well,” Brooke adds. “He’s the happiest kid you’ll ever meet.”
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