ST. LOUIS
Much of what 2-year-old Ke'Aiden has touched since birth are hard medical wires, latex surgical gloves and plastic toys. He is fed through a tube in his nose. He associates things going into his mouth with the pain of intubation or infection, so he clenches his jaw shut when anything comes near. Because he has been so sick for much of his short life, he has yet to learn to talk or stand.
A physical therapist uses a harness to help his legs learn to bear weight. An occupational therapist tries to get him to eat by snacking in front of him, safely brushing his cheek with crumbs. A specialist lets him explore textures like a feather, sandpaper, yarn and a brush.
All Ke'Aiden has known since birth has been a hospital room at St. Louis Children's Hospital. Because of a high-tech mechanical ventilator helping him breathe, he's only felt the outside world briefly a few times.
The breathing machine, a new technology that more safely assists the fragile lungs of premature babies, is typically used for a short period before a newborn gradually weans from the assistance. But for some reason, Ke'Aiden's lungs are not getting better. The machine that saved his life is now keeping him from fully living it.
He's the second child at the children's hospital whose body is unable to wean from the machine.
Jaxen Halfhill is 3 years old and has spent more than two years in the hospital tethered to the ventilator, his physical abilities much like Ke'Aiden's.
While medical advances are saving the lives of babies born before they should be, and even pushing the limits of viability to babies born at 22 weeks' gestation, their cases are reminders that technology doesn't always work as expected. Instead, doctors and families are left figuring out how to deal with the unexpected results.