When Kelley Thomas went in for a routine ultrasound 25 weeks into her pregnancy, something wasn’t right.
Her doctor discovered she was building too much fluid, and her baby had a cleft palate and clubfeet. Kelley and her husband, Dave, were referred to University of Iowa Hospitals & Clinics for the remainder of the pregnancy. After a six-week hospital stay, baby Carson was born.
He was six weeks early and not breathing.
“They show you your baby, and they whisk him away,” Kelley recalls.
Realizing Carson would face more problems was a shock for his parents.
Shortly after his birth, Carson was diagnosed with Gordon Syndrome—a rare genetic disorder often characterized by cleft palate, clubfeet, and other physical abnormalities—and DiGeorge Syndrome, which affected Carson’s lungs and breathing, development, and immune system.
Carson spent around 90 days in the University of Iowa Stead Family Children’s Hospital Neonatal Intensive Care Unit (NICU). During that time, Kelley and Dave relied on the doctors and nurses to keep them informed.
“The neonatologists were very helpful and always gave us a light at the end of the tunnel,” says Kelley.
Neonatologist John Dagle, MD, PhD, was a key player in Carson’s journey.
“He was very supportive and told us, ‘This is what we’re going to do, and this is what needs to be done—how do you feel?’” Kelley recalls. “He was very concerned with how we felt and in our opinions.”
As a baby, Carson relied on a tracheotomy—a surgical incision through his neck—to help him breathe. Pediatric otolaryngologist Richard Smith, MD, suggested taking a piece of Carson’s rib and inserting it into his airway to make it longer, wider, and stronger.
The procedure worked.
“When you can actually wake up and hear your kid make a noise that you haven’t heard for almost three years of his life, it’s a big deal,” says Kelley. “We will always be eternally grateful for that.”
Carson has had more than 20 surgeries at UI Stead Family Children’s Hospital and has received care in 15 different pediatric departments. His parents are grateful the hospital has all of the specialists their son needs.
“The care that Carson received at UI Stead Family Children’s Hospital was outstanding. We’re thankful we live so close, because there are so many people that we’ve met who aren’t even from the United States, who come over here for the care the university gives.”
Today, Carson is an outgoing teenager who loves all things “Hawkeye.” His parents couldn’t be happier.
“We know that he’s beaten most of the odds. When we come here, they’re just so surprised to see what he’s done or what he’s doing next,” says Kelley. “He loves to go to school. He loves to be around people. So in our minds and the doctors’ minds, he’s doing very, very well.”