One-year-old Eleni Scott leans against her mom, Karen, on their living-room floor as an occupational therapist coaxes Elly to grab a French fry, to regain better use of her right arm. She lost some muscle tone this summer, when she spent weeks lying unconscious in St. Louis Children’s Hospital.
Elly was born with ACD/MPV, alveolar capillary dysplasia with misalignment of pulmonary veins, a condition with a mere 200 documented cases. Most patients die within days or weeks after birth; Eleni, however, appeared healthy until she began having trouble breathing at three months. On May 25—a day after she’d said “Mama” for the first time—the then–8-month-old was referred to the hospital for a lung biopsy. Even the pathologist was incredulous: Eleni needed a new pair of lungs.
After getting her stabilized, doctors moved Eleni to the Maquet QUADROX-iD Pediatric Oxygenator while awaiting a pair of lungs, a process that can take months. Amazingly, eight days after being placed on the donor list, Eleni received lungs from a baby just her size and age. She was discharged a little more than a month later.
“This is a remarkable story for several reasons,” says Dr. Umar Boston, Eleni’s doctor. “She is the first patient in the world to be bridged to a transplant—and then get out of the hospital.”
Afterward, the baby’s voice was hoarse, and when she laughed, her body jiggled, but no sound came out. Niko, Eleni’s 6-year-old-brother, was the first person she saw when she opened her eyes; he’s the only person who can send her into giggling fits. He amused Elly so much, she eventually got her laugh back.
