Jordan Wilkison

From cradle to cardiologist

Double diagnosis leads Evansville boy to 15 years of treatment – and a cure

Lisa Wilkison carried her 6-week-old baby into the pediatrician’s office for a checkup. Before she knew what was happening, she was carrying him into a cardiologist’s office and then a hospital. Doctors had discovered a problem with his heart.

“I went straight to a pay phone and called my husband,” she said. “I was overwhelmed.”
The next morning, Jordan Wilkison took a three-hour ambulance ride from Evansville, Ind., to Riley Hospital for Children.

Jordan’s first surgery took place a week later. Too much blood was flowing to his lungs so surgeons made a small incision in his chest to restrict his pulmonary artery with a band. Teams of doctors and test after test finally resulted in two diagnoses: DiGeorge syndrome, a rare congenital disease that includes heart defects, certain facial features and recurrent infections; and Dandy-Walker syndrome, a congenital malformation of the part of the brain that controls movement.

After stabilizing Jordan, Dr. John Brown sent him home with seven medications. His parents knew they’d be back.

“Jordan needed more surgeries,” his mom said. “He had two holes in his heart and an extraordinary aorta. They’d never seen one like it.”

The next surgery, at 18 months, removed the artery band and repaired the holes in Jordan’s heart. In the years following, Jordan’s blood pressure stayed high on one side of his body, keeping him on medication. A third surgery at age 5 straightened kinks in his aorta, but did not lower his blood pressure.

A 10-year reprieve

For the next 10 years, Riley physicians and Jordan’s parents closely watched him. Jordan attended special education classes for learning disabilities; otherwise, he was a typical kid, arguing with his sister, Baylee, and making friends at school.

Jordan’s current teacher, Caleb Cherry, nominated him for Riley Champions.

“Jordan walks through life with a smile on his face and doesn’t let his differences bother him,” Cherry said. “He brightens any situation he’s in.”

During Jordan’s last surgery in 2007, every student in his school signed a banner and made a
DVD wishing him well.

“His blood pressure kept going up on one side, and there was another narrowing of his aorta,” his mom said. “They tried to insert a tube through the front of his chest, but the scar tissue forced them to close that incision and make another in his side.”

Today, remarkably, Jordan is off all medications for the first time in his life. As long as his blood pressure stays normal, he’s done with his visits to Riley.

Lisa Wilkison can’t say enough about the hospital that saved her son’s life. “They were so attentive. If you ring the nurse’s bell, they’re right there. And the nurses were always ready to have a conversation with me. I don’t know if they knew I needed that, but it was wonderful,” she said.