Kid Captain receives life-saving surgery at Stead Family Children’s Hospital shortly after birth

When newborn JJ Ward began coughing up a dark-colored discharge at a local hospital, his care team initially suspected he may have aspirated meconium. But an X-ray revealed a large mass in his abdomen, prompting the hospital to call an emergency transfer team.

"They wanted to fly him, but the weather didn't allow," says his mother, Tara.

JJ was instead rushed by ambulance to University of Iowa Health Care Stead Family Children's Hospital, where his father, Jake, followed shortly behind. Tara, who was still recovering from a C-section, was discharged later that day and joined them in Iowa City.

JJ was diagnosed with meconium ileus, an uncommon intestinal obstruction in newborns that occurs when abnormally thick meconium - a baby's first stool - blocks the small intestine.

During her pregnancy, Tara had additional ultrasounds, but she and Jake were told there were no major concerns. After JJ was born, they quickly realized something was wrong when he began coughing up what appeared to be green or brown fluid.

"They thought maybe he aspirated some meconium at first," Tara says.

JJ was born in May 2020, when COVID-19 precautions were in place. Both parents, however, were allowed to be at the hospital for his surgery the next morning.

"Everyone was so comforting there, saying 'We'll get this fixed. It will be all right,'" Jake says.

The surgical team removed about a third of JJ's small intestines. The team also suspected he had cystic fibrosis, as the obstruction can serve as a sign of the hereditary condition.

"His bowel had twisted on itself, and the part that was twisted had necrotized," Tara says. "It was really a critical thing for them to catch, as not much longer and he could have died from it. We were just so fortunate we had good providers who were able to diagnose that quickly."

Because JJ had difficulty gaining weight, surgeons inserted a Broviac line, a central venous catheter used to deliver nutrition and medications directly into the bloodstream.

He was eventually discharged on total parenteral nutrition, or TPN, an intravenous method of delivering liquid nutrients. JJ later was readmitted to the hospital with infections. After he became strong enough, his Broviac line was replaced with a gastrostomy tube, or G-tube.

He has since graduated from the G-tube, and has participated in clinical studies to advance cystic fibrosis research.

University of Iowa research has helped transform cystic fibrosis from a disease that was often fatal in childhood into a condition that many people can manage into adulthood.

JJ takes a prescription drug called Trikafta, which was developed based on research done at the University of Iowa and designed to improve symptoms and slow progression of the disease.

He's been able to swallow pills since he was 3 years old, Tara notes, and knows what to take in the morning and at night to manage his own condition. JJ also uses nebulizers and undergoes chest physiotherapy to clear his airways.

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