Des Moines Kid Captain’s puzzling diagnoses lead to rare genetic condition
Millie Judge’s family found answers at Stead Family Children’s Hospital after she developed seemingly random yet severe medical issues
Joe Judge sums up his eldest daughter Millie’s early days of life succinctly: “Everything was going fine, until it wasn’t.”
Millie was born at a hospital in Ottumwa, full-term and with little indication of anything wildly out of the ordinary, according to her mom, Betsy Judge. When Millie started having trouble breathing, her doctor then recommended a transfer to University of Iowa Health Care Stead Family Children’s Hospital in Iowa City.
“We were scared because we had no idea what was going on,” says Betsy Judge, who had worked at UI Health Care. “For myself, there were some familiar faces there.”
Those familiar faces and other members of Millie’s care team helped calm the family as they embarked on a years-long health care journey, including open-heart surgery for Millie at 4 months old and the discovery of a rare genetic syndrome.
Surgery improves outlook
After she arrived in Iowa City, cardiologists determined Millie had four heart murmurs that required surgery. The infant also had difficulty recovering from illnesses and suffered two collapsed lungs.
“I think that was scarier than when she was first born,” Betsy Judge says. “She was so ill and lost so much weight. She just couldn't get better.”
When Millie was only 4 months old, her parents faced the difficult news that she would need open-heart surgery.
Thankfully, Millie’s health greatly improved following the surgery in March 2016.
“We walked into her recovery room, and she looked great,” Betsy Judge says, noting that two heart murmurs were surgically closed, one closed on its own, and another remains. “We were just so relieved because that really helped her.”
A puzzling medical journey
Three months after her surgery, Millie still wasn’t meeting the typical milestones for a baby her age. Adding to their concern, the parents found what turned out to be a polyp in her diaper.
Although they lived two hours from Iowa City, the family decided to drive to Stead Family Children’s Hospital because of the relationship they had built during Millie’s last stay.
“We learned pretty quickly that with Millie, we just wanted to go to the children’s hospital,” Joe Judge says. “We didn’t want to have to explain everything over and over again.”
They met with specialists who ordered further tests, including a colonoscopy that detected more polyps.
Due to her larger head size, an MRI was also ordered, which eventually led to a diagnosis of Bannayan–Riley–Ruvalcaba syndrome with underlying PTen deletion, a rare condition that increases the young girl’s likelihood of developing various tumors. Millie’s parents saw her diagnosis as a completed puzzle, made up of what seemed like a never-ending assortment of ailments.
“There’s only a handful of people in the world who have this,” Betsy Judge adds. “At that point, they told us with this low muscle tone, they didn’t know if she would ever sit up or walk."
Finding solutions for Millie
With no known cure for the syndrome, treatment focuses on managing symptoms and regular cancer surveillance due to the fact that the genetic condition increases the possibility of developing certain cancers. Millie has undergone frequent colonoscopies, with 80 to 100 polyps removed each time.
Around Christmas of 2016, a photographer was taking photos as presents were delivered to hospital patients, and Joe Judge placed Millie on her bed to sign consent forms for the newspaper.
“I remember turning around and she starts turning purple,” Betsy Judge says. “The Code Blue team came in, and they were doing CPR, and they were able to get her back.”
That same day, Millie ripped an IV out of her hand and needed a blood transfusion.
“It was a very frightening day,” Betsy Judge says. “An awful day.”
Still, despite a number of frightening moments that would stress any parent, the couple trusted in Millie’s care team and the treatments they provided.
They’ve always been right,” Joe Judge says. “We’ve had just amazingly scary events, and they’ve given us the confidence to get through all of them.”
Millie was placed on a total parenteral nutrition — also called a TPN diet — in which nutrients are delivered directly into the bloodstream, and physical therapists worked with her at the Judge’s home.
Before she turned 3, Millie took her first steps, and by Halloween of that year, she made it around the town square for trick-or-treating.
Further surgery lowers cancer risk
Millie’s care team continues to monitor her health closely. This past summer, she underwent surgery to have her colon removed to lower her risk for cancer.
“Her surgery went very well,” Joe Judge says, noting Millie was walking the floor after two days and discharged after just four days. “She has kept a very positive attitude and is very curious about what this means for her. We have even had to have a conversation that maybe we don't ask everyone we meet if they have had an organ removed.”
Now 10 and in fourth grade, the Des Moines girl enjoys math and art, and her favorite game: playing “Dr. Millie” at home, putting on a white coat to care for her sisters, pets, and toys.
“With Millie’s health, there have been so many unknowns, but the doctors have given us hope,” Betsy Judge says. “They’ve always made her feel comfortable. She’s very brave, and they’ve made it a positive experience.”
The couple credits the hospital’s child life specialists and other members of Millie’s care team for helping her beat the odds.
“The experience, compassion, care and concern from the entire staff at Stead Family Children's Hospital is so far beyond anything else, I would not even think of going elsewhere for my daughter’s care,” Joe Judge says. “When Millie needed to be resuscitated, the quick response saved her life. Just as impressive was the understanding that we were scared parents and our needs were not ignored. Ultimately, the most important thing to me is that my daughter is thriving, and that would not be the case without Stead Family Children's Hospital.”
Photos from Kids Day 2025
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