Parents may clash on quality of kids’ lives

NEW YORK - Reuters

About one in four parents of children with a serious and often fatal genetic condition say they feel judged by doctors when they want life-sustaining treatment for their newborns, in a new study.

The majority of parents of children with an extra 13th or 18th chromosome - known as trisomy 13 or 18 - said doctors had told them their kids were “incompatible with life” or would “live a life of suffering” in the course of counseling against pursuing life-prolonging treatments.

“There are some valuable points that the medical establishment could take from this,” said Dr. David Sweetser, chief of medical genetics at Mass General Hospital for Children in Boston.

“It’s a delicate situation and I don’t think you could make a generalized statement that these babies should never receive life sustaining treatment. Those types of interventions should be personalized,” Sweetser, who was not involved in the new study, added.

In the U.S., the Centers for Disease Control and Prevention estimates trisomy 13 and 18 occurs, respectively, in about 1.3 and 2.7 of every 10,000 live births.