Cody’s Story: Saved Twice from Rare Infection, Family is Doubly Grateful for His Health

Cody’s family describes him as a happy-go-lucky teenager who loves nature, animals and jazz music. He was born with Sotos syndrome, a rare genetic disorder resulting in excessive physical growth early in life with effects on several of the body’s organ systems. For Cody, the condition has caused problems with his heart, vision and cognitive learning. With support from his family, proper treatment and various forms of therapy, Cody has learned to live with his condition with few complaints along the way.

So when the usually upbeat Cody told his family he felt sick in early November 2020, they saw reason to worry.

Cody’s pediatrician urged his parents to take him to the emergency department. Once at the hospital, Cody’s blood pressure began to drop. That’s when they transferred him to Lurie Children’s.

“We were worried about how he was going to be seen in the middle of this pandemic,” says Cody’s mom, Cynthia. “But they took him right away, put us in a room and a whole team came in to treat Cody.”

A Familiar Diagnosis

A series of tests at Lurie Children’s confirmed that bacteria had infected Cody’s blood, causing two valves in his heart to malfunction and limit blood circulation in his body. His kidney was also affected, requiring emergency surgery.

Over the course of the next several days at Lurie Children’s Lefkofsky Family Pediatric Intensive Care Unit (PICU), a team of specialists – including a cardiologist, neurologist, urologist, infectious disease specialist and ophthalmologist – monitored Cody and consulted with each other to determine the source of his infection and the right course of treatment. Together, they determined Cody’s infection had most likely started with bacteria in the urinary tract. His preexisting heart problem – known as mitral valves – caused the bacteria to quickly travel throughout his blood. 

The team that saved Cody’s life gave his family hope. “Every person we came in contact with did everything they could to keep us informed and make sure our entire family was taken care of,” Cynthia says. “You are flooded with so many emotions as you try to keep everything together. But in the worst-case scenario, everything went right. Everyone played a part.”

It wasn’t the first time Cody had experienced an emergency of this kind—or a great outcome. In 2015, he had a similar infection after spending a week at a summer camp for children with special needs. Doctors at the family’s local hospital said they were not equipped to treat him, so he was transferred to Lurie Children’s PICU. Days later, he returned home with intravenous antibiotics that Lurie Children’s nursing team had trained his parents to administer his medication at home.

The same antibiotic regimen, administered both in the hospital and at home, saved Cody’s life again this year. “They took every burden from us and lifted it,” Cynthia says. “So when we came home with our son both times, we knew exactly what to do.”

Safe, Happy and Healthy at Home

Now at home, Cody is finishing his current antibiotic treatment and following up with pediatric specialists at Lurie Children’s who continue to monitor his overall health.

As his family prepares for Thanksgiving, Cynthia says they are extra grateful this year for Cody’s health and for the team at Lurie Children’s who took care of him.

“When we were at Lurie Children’s, we were always reassured that they knew exactly how to take care of him. You can’t even measure the comfort and compassion. When you go above and beyond and take an interest in a family, that’s huge. It felt like a mom taking a care of you.”

In addition to his health, Cody has another new reminder of the care he received at Lurie Children’s: the Amazon Echo that he won playing Skylight TV Bingo in his hospital room. “He loves music, and he’s an old soul, so at home we hear him saying, ‘Alexa, play Duke Ellington!’” Cynthia says.

“He’s such a good spirit, and he has such a full life ahead of him.”