One of the most disturbing places I've ever worked was a neonatal intensive care unit. Doctors fought valiantly to keep severely ill infants alive on high-tech machines, but often failed to do so. Babies, at the very beginning of their lives, faced their untimely ends.
The death of innocent newborns poses many questions of fairness and fate. Charlie Gard, the British infant now in the middle of a global political, religious and media maelstrom, is the latest child to draw attention to these questions.
He and his family have been through a torturous roller coaster involving doctors, judges and government officials.… Seguir leyendo »
"A pilot called me last week, concerned he might have Marfan syndome," a health care provider told me recently at a meeting. "But if I find he has the disease, do I have to report him to the Federal Aviation Administration? And if so, should I call him first and tell him that? Would he lose his job?" She was totally unsure what to do. Several other providers were present, and none of them knew, either.
"You should definitely call him and tell him," a health care lawyer, who was present, said. "You have to provide full disclosure."
"But presumably, he knows that you might do so," I said.… Seguir leyendo »
"It's a miracle," she told me. "We can now have a baby that won't have Huntington's disease. I thought I'd never be able to have any kids -- because of the disease." Her father had died from this disorder, which results from a gene mutation. She feared that she might have the mutation, too. But she was too scared to undergo testing for it. She also worried that if she had it, she might pass it on to her children.
This disease causes severe neurological and psychiatric problems, and eventual death at around the same age as one's parent died of it -- usually in one's 40s or 50s.… Seguir leyendo »