Successful Weaning After 113 Days of VV-ECMO in a Pediatric Patient with Severe ARDS Following Stevens-Johnson Syndrome, A Case Report

Korbinian Beil^1,2,3*Matthias Hermann¹Nikolaus Haas^1,3Robert Dalla-Pozza¹Sebastian Michel^1,2,3Andre Jakob¹Marcus Fischer¹Joseph Pattathu¹

• ¹LMU Munich University Hospital, Department of pediatric cardiology and intensive care, Munich, Germany
• ²LMU Munich University Hospital, department of surgery of congenital heart defects, Munich, Germany
• ³LMU Munich University Hospital, Department of thoracic transplantation in children, Munich, Germany

Veno-venous extracorporeal membrane oxygenation (VV-ECMO) is an established rescue therapy for severe pediatric ARDS, but prolonged support is rarely reported. We describe a previously healthy 6-year-old boy who developed Stevens-Johnson syndrome, complicated by progressive respiratory failure and severe ARDS. Despite maximal ventilation, oxygenation remained insufficient, and VV-ECMO was initiated on day 11 of illness. Cannulation was performed via jugular and femoral access, followed by lung-protective ventilation, repeated surfactant administration, corticosteroid therapy according to the Meduri protocol, and ACE inhibitor therapy. ECMO support was complicated by pulmonary fibrosis, cholestatic liver dysfunction with secondary hemochromatosis, and prolonged sedation-associated delirium with subsequent critical illness polyneuropathy. A first attempt to discontinue ECMO after 90 days failed due to presumed pulmonary embolism, requiring recannulation. Ultimately, successful weaning was achieved after 113 days of VV-ECMO. The patient was transferred to a specialized pulmonary and neurological rehabilitation center and discharged home after six months, still dependent on a tracheostomy cannula. At 18-month follow-up, he requires only nocturnal mechanical ventilation through the tracheostomy, attends school, and leads an otherwise normal life. A trial removal of the cannula and closure of the stoma is scheduled for spring 2026. This case illustrates that prolonged VV-ECMO can allow lung recovery in pediatric patients with ARDS secondary to SJS, despite complications. Careful multidisciplinary management and preserved neurological function were key factors supporting long-term survival.