When Jack’s walking became odd at age 5, doctors chalked it up to a mild form of cerebral palsy that can occur in children born too soon. “We were okay with it,” his mother said, because mild cerebral palsy would not “affect the length of his life or his enjoyment of it.”
Jack’s parents were also reassured by his ability to catch up; with help, he mastered various skills: jumping, walking and writing in cursive.
But by age 10, when his ability to walk badly deteriorated, a reevaluation by his doctors resulted in a very different diagnosis and prognosis.
“We had all those years of feeling that he was a normal, healthy kid with some challenges,” his mother recalled. Discovering what was really wrong has been a heavy blow, magnified by Jack’s perceptive awareness of its implications.
Ruth DeWitt, who lives with her family in Howell, Mich., outside Ann Arbor, was in the hospital undergoing a test for preeclampsia, or pregnancy-induced hypertension, when she began hemorrhaging, a sign of placental abruption. The life-threatening condition occurs when the placenta prematurely detaches from a woman’s uterus. Rushed into surgery, Jack was born weighing 3 pounds, 9 ounces, and was transferred to the neonatal intensive care unit at the University of Michigan Medical Center. Small but strong, he needed oxygen but no ventilator, and he came home 15 days later.
“He seemed to be a newborn forever,” his mother recalled. After five months, when he had not rolled over and was found to have the motor skills of a 4-week-old baby, he was enrolled in an infant development program.
For the next three years, his diagnosis varied: “early childhood developmental delay” gave way to “developmental coordination disorder.” The good news was that his cognitive abilities were not affected, and he made significant progress with his motor skills. His parents were thrilled when, shortly before his third birthday, he learned how to jump.
By age 4, Jack was discharged from an early intervention program. “He did really well in kindergarten,” his mother recalled, and his developmental problems seemed to recede.
But a year later, Jack began walking on his toes in karate class. Toe-walking can be a sign of cerebral palsy or autism, or simply a behavior that children outgrow.
Jack was referred to Liza Green at the University of Michigan. A physiatrist, or doctor who specializes in rehabilitation medicine, Green believed that Jack’s toe-walking might be caused by overly tight calf muscles; she recommended Botox shots and leg braces, both of which he received.
“He began walking much better,” Green recalled.
But over the next two years, concerns about his gait did not dissipate. He seemed to have trouble keeping his balance, and on the baseball field, his mother noticed, Jack’s running seemed jerky, not fluid like that of the other kids.