When Keri Tyler was pregnant with her second child in 2008, she saw a notice from the Arkansas Children's Nutrition Center (ACNC) requesting participants for a research study. She wanted to help future generations of children, so she decided to learn more. What she couldn't have known when she decided to enroll her son Keegan in a nutrition research study was how much being a participant would impact him. During a routine follow-up visit to ACNC when Keegan was five years old, researchers spotted a condition that had gone undetected since birth.
Keegan and his mother consented to share their story. Because Keegan is a patient at Arkansas Children's Hospital (ACH) and a research participant at ACNC, some details of the story have been omitted to maintain the integrity of the research study following Institutional Review Board (IRB) standards.
Keegan Tyler: Research Participant
ACNC has around a dozen different research projects running at any given time. Some study pregnant mothers, but most focus on the eating habits of infants and young children. Agreeing to participate in a study means agreeing to be measured during regularly scheduled visits. Researchers take typical measurements like height, weight and length every few months during a baby's first year. These measurements are similar to those a caregiver and child would experience at a routine visit to a pediatrician.
Aline Andres, Ph.D., R.D., associate director of the Clinical Nutrition Lab at ACNC and professor of pediatrics at the University of Arkansas for Medical Sciences, explained that most research studies also measure factors other than height and weight, like bone health, muscle mass and body fat mass.
"We do assessments that maybe your child wouldn't get to do going through their pediatrician," Andres said. "It sometimes happens during research participation that we discover conditions that the parent or child may not have known about."
In Keegan's case, an ultrasound during a follow-up visit to ACNC when he was five years old identified a potentially harmful condition. Ultrasounds are non-invasive scans using low-power sound waves that can evaluate blood flow, identify joint inflammation, or diagnose gallbladder or metabolic bone disease, among other things. Researchers at ACNC use Arkansas Children's Hospital facilities to conduct ultrasounds.
It's uncommon to identify unexpected conditions in research participants. Still, it happens often enough that the Office for Human Research Protections in the U.S. Department of Health and Human Services has protocols for handling what are officially known as "incidental findings." Researchers at ACNC followed the protocols and informed Keegan's parents.
Keegan's mother said, "I was a little anxious because I didn't know what they found. But after talking to them and figuring out what it was, I knew exactly what we needed to do."
ACNC researchers don't provide medical advice. "It's up to the parents to take the course of action that they think is best for their child," Andres said. Keegan's parents took Keegan next door to Arkansas Children's Hospital. They trusted the care they'd receive because of their experiences at the hospital with Keegan's older brother. ACNC and ACH are two separate branches of the Arkansas Children's health system, but the shared core values of safety, teamwork, compassion and excellence made Keegan's transition from research participant to patient seamless.
Keegan Tyler: Patient
Ashay Patel, D.O., chief of urology at Arkansas Children’s Hospital, said Keegan’s condition occurs in about 3% of boys born full-term (between 37-40 weeks of pregnancy) but usually resolves on its own by the time a child is six months old.
“If left untreated, it may have affected his growth in adulthood and also may have increased his risk for cancer,” Patel said.
Keegan's treatment involved outpatient surgery. After about a week of recovery time, he was back in school.
"We went six years, and nobody caught the issue until he came for that ultrasound at the nutrition center. We were able to take care of it before it got to the point where something could have happened. I'm very grateful," Keri Tyler said.
Keegan Tyler: Athlete, Video Game Player, Teenager
Most of the visits to ACNC required of research participants happen during the child's first year. With the study Keegan was a part of, ACNC requested follow-up visits at 5 and 14 years. As a 14-year-old, Keegan enjoys video games and basketball. Before the pandemic canceled the event, he qualified for the Junior Olympics as a swimmer. He would have preferred sleeping late rather than getting to ACNC early for a day of measurements, but he stayed in good spirits throughout the visit.
His mother says contributing to science and the betterment of future generations runs in the family.
"My dad was in a research study for pulmonary fibrosis at Vanderbilt," she explained. "He was one of the ones that helped with the study of that pulmonary fibrosis and the drugs that helped to prolong the life if you have pulmonary fibrosis."
Families like the Tylers help Arkansas Children's fulfill its mission to champion children by making them better today and healthier tomorrow. Arkansas Children's is proud to be home to one of only two research sites in the country focused on pediatric nutrition.