Thanks to Life-Saving Critical Care, Riley Is ‘Showing off His Big Smile Again’

Riley is an energetic six-year-old who loves music, trains, dogs and making people laugh. He has a happy disposition – one that was hard-won, thanks to a host of medical setbacks starting when he was just a toddler 

Persistent fevers, mysterious rashes, and “feeling ill” became a regular occurrence for Riley when he was three years old. After also developing joint pain, Riley was diagnosed with systemic juvenile idiopathic arthritis (SJIA). SJIA is an autoinflammatory disease characterized by systemic inflammation, which often affects the liver, lungs, and heart. SJIA is the rarest and most severe form of juvenile arthritis. 

“That year after the diagnosis, he was really up and down with treatments. The disease took over his life,” remembers Riley’s parents, Tim and Lisa. “We could not find the right medication regimen for him. He was on a lot of steroids and other immunosuppressants, but we could not seem to get over the hump.” Riley was often sick and missed typical toddler activities such as preschool. Instead, he spent many days in doctor’s offices, outpatient labs, and emergency rooms.

In the spring of 2022 Riley woke up one day with an unremitting high fever and widespread rash. His parents rushed him to a local emergency department where his health rapidly declined. Riley had to be intubated and started on medication for dangerously low blood pressure.  

Lurie Children’s transport team rushed Riley by ambulance to the main hospital, where a team of pediatric intensivists were ready to care for him. At Lurie Children’s Pediatric Intensive Care Unit (PICU), the team addressed many serious complications. Riley required mechanical ventilation to support his lungs and continuous dialysis for kidney failure. High doses of medication helped increase his blood pressure. He had to be medically paralyzed and sedated to help stabilize his condition.  

At this point, it became clear that Riley had succumbed to a serious complication of SJIA known as Macrophage Activation Syndrome (MAS). MAS is a massive inflammatory response that overwhelms the entire body. If not treated promptly, MAS is often fatal. 

Teamwork ‘Saved Riley’s Life 

With Riley’s condition affecting so many systems in his body, a multidisciplinary team of specialists was crucial to providing the life-saving care he needed 

While in the PICU, Riley was also diagnosed with atypical hemolytic uremic syndrome (aHUS), an extremely rare disease characterized by the destruction of red blood cells, the formation of tiny blood clots, and low platelets. In addition to the medical diagnoses, three of Riley’s limbs began to show signs of necrosis due to inadequate blood flow. Months later, those limbs required partial amputation.  

Throughout the family’s time in the PICU, Tim and Lisa felt supported by the medical team who saved their son’s life. Led by Dr. Rajit Basu, the PICU team involved the parents in morning rounds, regularly taking time to consider their suggestions and concerns, which included all members of Riley’s care team: physicians, nurses and therapists.  

“The interdisciplinary approach saved Riley’s life,” Tim says. “When my wife and I were feeling scared or had questions, the medical team was there to support us and offer hope. I remember Dr. Basu telling us, ‘The house was on fire, but the structure is still standing. The care team collaborated to ensure Riley received the precise care he needed.”

“I always appreciated that they included us, took time to sit down with us, and make sure we were hanging in there OK,” Tim says. “You can’t really quantify how important that was." 

Lurie Children’s Program in Inflammation, Immunity, and the Microbiome (PrIIMe) is dedicated to meeting the needs of pediatric patients just like Riley, who have complex disorders of the immune system, affecting multiple body systems. PrIIMe consists of specialists from multiple areas including immunology, oncology, infectious disease, critical care, and rheumatology. Input from all team members forms an individualized diagnostic and treatment plan based on the child’s needs.  

Along with the PrIIMe team, the PICU often consults with other medical experts around the nation for insight on extraordinarily complex cases. In Riley’s case, the PICU team consulted a renowned rheumatologist from an out-of-state hospital who recommended prompt administration of a new, highly immunosuppressive medication. It was after starting this medication that Riley began to show signs of improvement 

After one month in the PICU Riley was able to shed many of the lines and tubes that helped keep him alive. During that month, Riley persevered through the treatments involving a ventilator, a dialysis machine, blood pressure medications, heavy sedation, numerous procedures, and high infection risk. Due to the meticulous care of the ICU staff, led by the nurses and therapists, and guided by the Critical Care providers, he regained his ability to talk, eat, and walk. After 60 days at Lurie’s, Riley was miraculously discharged home to embark on a long road to recovery. 

'He Perseveres’ 

Now at home with his family, Tim and Lisa say they are seeing Riley at his best for the first time since he was a toddler 

Thanks to quality care in the PICU, Riley’s vital organs are healthy and support his health. He no longer needs dialysis or oxygen and has remained off steroids for the past year. “The PICU team was outstanding in caring for Riley and caring for us,” Tim says. “The physicians and nurses went above and beyond to help save our child’s life.” 

"He’s finally thriving going to kindergarten, making friends, playing at the park. He is learning how to be a kid again” Tim says. “Hes come a long way.”  

We are now cherishing the little things parents often take for granted – holiday gatherings, going on family outings, siblings playing together. We thank God for those moments. Riley does not give up easily. He perseveres and inspires us on a daily basis. Most importantly, he is showing off his big smile again—something that was missing for a long time.” 

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