The health care journey of 6-year-old Nile Kron, of Iowa City, Iowa, began before he was even born at University of Iowa Stead Family Children’s Hospital.

Diagnosed via ultrasound, providers discovered the first signs of a potential cleft lip and palate.

“There were some concerns he wasn’t growing as he should be,” his mother, Brittany, recalls. “We met with the high-risk pregnancy team the next week to talk about plans.”

Brittany was put on bed rest with pre-eclampsia when her blood pressure became elevated later in her pregnancy.

“There was a huge team of doctors when I delivered,” she said. “They were phenomenal.”

Born early at nearly 33 weeks, Nile was quickly diagnosed with cleft lip and palate, followed by several other serious diagnoses.

He had scoliosis—an abnormal curvature of the spine—and tethered spinal cord, in which the spinal cord attaches to the spinal canal. His right ear was absent and tissue in his left eye was missing, called a coloboma. He also was born deaf.

Brittany notes that Nile’s health conditions were “completely random,” and that blood tests performed after he was born came back normal. “There were a lot of unknowns, but I just knew we were getting the best care,” she says. “The university is known for amazing care, and we’ve seen it firsthand, but we never thought we would experience it to the extent we did.”

Witnessing life-saving expertise

At just a week old, Nile needed an MRI. To keep him calm, he needed to be sedated. Suddenly, his oxygen level and heart rate dropped, prompting an immediate response from medical personnel. They had to perform chest compressions on Nile three times that day.

Brittany and her husband, Rick, watched as the medical team saved their son’s life.

“It was a very scary 24 hours,” she said. “If not for the amazing team of doctors and nurses, Nile would not be here today.”

Nile spent 52 days in the Neonatal Intensive Care Unit (NICU), with nurses and specialists becoming like family.

“We were at ease knowing he was in great care,” Brittany says.

The healing effect of ‘MAGEC’

In October 2017, when he was almost 8 months old, Nile had his first surgery. The procedure meant to fix his cleft lip and palate was successful, but he experienced breathing difficulties after surgery and was placed on the Pediatric Intensive Care Unit (PICU) for a couple of nights. The Ronald McDonald House provided their family with food, toiletries, and other items so they did not have to leave Nile’s bedside.

He has since had nine more surgeries. Nile’s second surgery took place shortly after he turned 1 to separate his spinal cord from his vertebrae.

“This complex and invasive procedure brought on a long road of recovery for Nile,” Brittany says. “After surgery, Nile had to lay completely still for 72 hours; a tough task for an excited and eager 1-year-old boy.”

Nile also underwent additional cleft lip and palate surgeries, as well as extensive oral surgeries, a hernia repair surgery, and a surgery to close off his left inner ear canal to prohibit infection.

In June 2020, Nile had two MAGnetic Expansion Control TM (MAGEC) rods placed in his back to minimize the progression of scoliosis. These implantable rods are magnetically lengthened every three months using an external remote control. Nile will receive these adjustments at UI Stead Family Children’s Hospital until he finishes growing, when they will be replaced by permanent rods.

Communicating joy without words

Brittany cites the milestone moment when cochlear implants were turned on for the first time to help Nile hear.

“He always smiles, but you could tell it was a different kind of smile,” she says. “You could tell he was hearing.”

While Nile is still nonverbal, his parents hope he will be able to speak someday. In the meantime, they’re learning sign language to better communicate with him, and his classmates are learning five signs per week. Nile also has a device that helps him communicate.

“Nile has taught us that joy can be beautifully communicated without any words. The smile on his face says it all,” Brittany says. “He doesn’t let anything stop him. He wants to be just like everybody else. He wants to fit in.”

Now 6 years old and in first grade, Nile loves riding his bicycle, playing outdoors with his construction toys, drawing, and watching the bus come down the street to pick him up for school.

He continues his speech therapy at the UI Wendell Johnson Speech and Hearing Clinic twice a week and has attended the Listen and Speak Up summer preschool program.

The family appears at University of Iowa Center for Advancement events to share their story and to inspire other families.

“Nile was named after Nile Kinnick, one of the greatest football players who overcame many obstacles and challenges throughout his lifetime,” Brittany says. “Nile Kinnick and Nile Kron have been an inspiration to all who know their stories. Every day, Nile conquers the health challenges that are presented to him. Even though he is only 6 years old, he embodies strength and courage.”

Nile’s parents credit his care team for the progress he continues to make.

“The team treats your child like they would treat their own child,” Brittany says. “We are so grateful for his amazing care and the genuine interest in Nile’s well-being. We’re so lucky that we’re so close to the university. We’re very fortunate.”