Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?
icky gazed up toward the pine trees as his mother, Cindy Preslar, pushed him along the village road in an orange jogging stroller. She was marking the route for the Summer 2014 Run Through the Clouds 10K, a fund-raiser for the public schools in Cloudcroft, N.M. “You’ll run with Dad and Max tomorrow,” she said. “Right, Ricky?” She ruffled his fine blond hair. By “run” she meant “ride” — Ricky was 7, but his legs were unable to bear his full weight. As a result of a complication during pregnancy, Cindy says, he was born with a form of cerebral palsy known as spastic quadriplegia with static encephalopathy, which meant permanent brain damage and severely limited eyesight because of cortical vision impairment.
Ricky’s problems were not recognized immediately. He was a fussy eater but an otherwise genial baby; the Preslars’ friends commented on the twinkle in his eyes. Then, at about 3 months, he began to jolt awake at night, the back of his pajamas soaked with sweat. One afternoon, when Cindy laid him on his changing table, he arched and crossed his arms, and his eyes rolled back in his head as if he were in the throes of a seizure. A CT scan taken soon after that revealed a scarred, atypically small, or microcephalic, brain. The Preslars don’t know how much Ricky understands, but based on medical assessments, he is thought to have the developmental age of a 6-month-old infant.
