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World-class Partnership Puts Diego on his Feet

October 14, 2015

Yasmin Gamero del Castillo jolted awake to hear her 6-year-old son Diego screaming in panic. From that dark March night at home in Bogota, Colombia, the family began a long and sometimes terrifying journey through intensive care units on two continents, and a long process of rehabilitation. Crucial to Diego's still-ongoing recovery was the collaboration between Ann & Robert H. Lurie Children's Hospital of Chicago and the Rehabilitation Institute of Chicago (RIC) to deliver world-class care.

In late February, Diego came down with a mild tummy bug which lingered for more than a week. His pediatrician was not worried, and Diego stayed home from school for several days with slight diarrhea and, later, some allergy symptoms. On the night of March 10, everything changed.

When Yasmin ran to her screaming child, she found him sitting in the bathroom unable to walk, with glassy, unfocused eyes and dilated pupils. Yasmin woke her husband Pedro, and they headed to the emergency room of Fundación Santa Fe in Bogota.

Diagnosis and a dual promise of hope

Over the next 36 hours, Diego's condition steadily worsened. Then, a diagnosis: Guillain-Barré syndrome, an autoimmune inflammatory disorder triggered by a viral or bacterial infection. It was advancing rapidly and attacking Diego's lungs, causing a brief but terrifying respiratory failure. He remained on a ventilator under sedation for the next five weeks while experiencing the pervasive muscle paralysis that characterizes the most severe cases of Guillain-Barré, unable to move or even blink.

Treated in Bogota with immunoglobulin therapy, Diego's condition gradually improved to the point of breathing on his own, and his parents began making plans for the next stage of care. Their son was returning to them, but with significantly impaired mobility and vision. Because his brain stem had been involved, his recovery would be long and challenging. They knew they needed to find both a top children's hospital and a world-class rehabilitation center. After extensively researching US and European hospitals, they chose Chicago because of the combined strengths and reputations of Lurie Children's and RIC.

According to Diego's father, the Chicago institutions were easy to work with. Both have international patient programs with staff adept at managing logistical details, providing interpreters and smoothing the process for stressed families traveling from many nations. Last year, patients from 44 countries came to Lurie Children's for treatment via the hospital's International Patient Services program. Whether from another country or a Chicago neighborhood, any critically ill child benefits from the smooth continuum of care the two institutions can provide.

Robust partners with RIC

"We have a very robust collaboration with RIC, made easier when the hospital moved downtown in 2012," says Leah Harris, MD, Division Head of Pediatric Critical Care at Lurie Children's, where she oversees the Lefkofsky Pediatric Intensive Care Unit (PICU) where Diego was admitted. "We send patients to RIC after they are stabilized in the PICU, and Dr. Charles Sisung, the RIC's Medical Director of the Pediatric and Adolescent Rehabilitation Program, walks over to Lurie Children's to see patients and confer with us on a post-PICU game plan."

Lurie Children's and RIC share well over 100 patients each year, including international pediatric patients. A key reason is that many Lurie Children's Neurocritical care patients recovering from a critical illness, trauma or stroke require lengthy rehabilitation, which RIC can provide. Lurie Children's neurology and neurocritical care fellowships reflect this close relationship, structured so that fellows do rotations at RIC.

Diego arrives in Chicago

Arriving by medical jet, Diego was transported directly to Lurie Children's PICU where specialists made sure there were no neurologic issues or complications that had been missed earlier.

After a period of stabilization and treatment in the Lurie Children's PICU, Diego's transition to RIC began. He spent several weeks as an inpatient in the RIC's pediatric rehabilitation program and then transitioned to the RIC outpatient center for daily physical therapy, where he remained into the fall, relearning to walk and building up strength.

Joint follow-up clinic

Diego and his parents recently returned to Lurie Children's for a visit to the neurocritical care follow-up clinic, where he passed the tests put to him with flying colors.

Diego's follow-up visit revealed a child of quick intelligence and humor, who enjoyed sharing some of his favorite Chicago experiences: museum visits, sushi dinners and the view from the top of the John Hancock Center. As autumn fills the air, Diego is approaching the end of his treatment in Chicago and can look forward to returning home, his path ahead made easier by the partnership between two great Chicago institutions.

Dr. Harris is the Posy and John Krehbiel Professor in Critical Care Medicine.

This article originally appeared in the Fall 2015 issue of Heroes magazine.