Kid Captain Adam Arp has over 11 yards worth of ‘Beads for Bravery’ from the University of Iowa Stead Family Children’s Hospital.

The 16-year-old from Williamsburg, Iowa, has received care at UI Hospitals and Clinics his entire life. The children’s hospital gives out beads for any medical procedure a child might go through — clinic visits, blood draws, air lifts, infusions, and other operations.

“Everything that you would go through has a specific bead, and then you have a string of beads with your name on it, and it just accumulates,” Trina Haasis-Arp, Adam’s mother, said. “It puts all those drives into Iowa City and all those calendar crunches on when you’re going to do appointments, it gives it a tangible, you can look at it and go, ‘Oh wow.’”

Haasis-Arp was referred to UIHC when she was 20 weeks pregnant, when her local hospital in Williamsburg found irregularities in her ultrasound.

“It’s so quick,” Haasis-Arp said. “Once they figured out something was wrong, they sent me straight to the university. It was just so fast, and you’re trying to learn as much as you can. This was like, May, and he was born in September.”

Once she arrived at UIHC, Haasis-Arp underwent an amniocentesis procedure which removes amniotic fluid from the uterus for testing. The amniocentesis found that Adam had spina bifida and hydrocephalus, along with only one kidney.

While Haasis-Arp was still pregnant, she and her husband, Joel Arp, went through genetic counseling to prepare for Adam’s conditions. They also went to the Center for Disabilities and Development to talk through what to expect.

When Adam was born on Sept. 14, 2006, he was laid on his stomach because of his spina bifida. He had his first surgery at just nine hours old.

In that surgery, doctors closed Adam’s spinal defect. They also inserted a shunt for his hydrocephalus — which is a buildup of fluids in the brain. The doctors didn’t connect the shunt at first, Haasis-Arp said, because they weren’t sure about the fluid in his back.

“Spina bifida is like, his spine is on the outside of his body,” Haasis-Arp said. “He had a big red bump … they had to do his surgery for his back closures, and then skin grafts and make a cool little scar that he has for life.”

Adam had a second surgery at two weeks old to connect his shunt through a tube in his abdomen. The family spent 28 days at UIHC before he was released. Now, Adam is on his third brain shunt at 16 years old — the most recent one was placed in February.

Throughout his life, Adam has also worked through club foot, hip and back problems, and complications associated with having one kidney. Haasis-Arp said Adam has gone through 14 surgeries over the course of his life.

Because of his spina bifida, Adam is also paralyzed from the knees down. He uses specialized Knee Ankle Foot Orthotics as well as arm crutches to walk. The family also has to monitor his bladder and make sure that, if he gets a UTI, it doesn’t damage his kidney.

“A lot of things are symptoms that are ongoing, they can change frequently, or sometimes they’re dormant symptoms where we just know that we need to watch for it,” Haasis-Arp said.

Haasis-Arp had meant to nominate Adam to be a Kid Captain for years, she said, and she essentially had to write essays for each question.

“We talked about it, we had people tell us all his life that we should do it,” Haasis-Arp said. “I’m really bad at computers, so I always missed the deadline … when they chose Adam, it was really cool that it was actually happening.”

This season, Kid Captains are choosing which song will play during The Wave at the end of the first quarter. The Arp family chose Luther Vandross’ version of  “One Shining Moment” —  a song that’s also played for the victors of every NCAA men’s basketball tournament, Joel said.

The family chose the song because of its connection to the Williamsburg community, Haasis-Arp said. “One Shining Moment” was also associated with the Tater Tough movement.

Tater Tough was a campaign that centered around Tate Schaefer, a boy from Williamsburg who was diagnosed with an inoperable and fatal childhood brain tumor called Diffuse Intrinsic Pontine Glioma at age 11. Schaefer died in March 2021.

“We have such a strong community support in Williamsburg,” Haasis-Arp said. “‘One Shining Moment’ is for our buddy Tater Tough, who lost his life to DIPG. It’s kind of what brings Williamsburg together as a family, and we all think about supporting each other, is the main thing. It’s kind of emotional for us all.”

The Tater Tough movement also impacted the Iowa men’s basketball team, who wore T-shirts dedicated to Schaefer in 2019.

Adam’s family is filled with Hawkeye fans, and its looking forward to Adam being the Kid Captain in one of the biggest Iowa football games of the year. Adam is especially looking forward to seeing his favorite player, punter Tory Taylor.

Adam’s family is also going to appear on Fox Sports ahead of the 11 a.m. game.

“The Kinnick Kids Day [on Aug. 13] was the big release, and then we find out the Michigan game is the ANF game, the spirit game, and you’re like, ‘Oh, wow.’” Haasis-Arp said. “And now Fox is coming to town, so it’s crazy.”

Iowa will take on No. 4 Michigan at Kinnick Stadium in a rematch of the 2021 Big Ten Championship Game. The Wolverines dominated the Hawkeyes, 42-3, in their last meeting in December 2021.

“I hope it’s competitive, at least,” Joel said.