Study indicates birth defects may not be as lethal as once thought

Canada, illustrate how rare the conditions are and how most babies still die. Of the 428 babies born, only 65 — less than 20 percent — lived for at least a year. Twenty-nine survived at least 10 years. There’s little previous research on these children surviving that long, and the new results suggest the birth defects are not always as lethal as doctors have advised parents.

In the study, about 70 percent of the 76 infants who had surgery lived for one year after the procedures. But whether surgery prolongs survival is unclear, said Dr. Katherine Nelson, the Canadian study’s lead author and a palliative care specialist at Toronto’s Hospital for Sick Children. Most infants in her study who had surgery were at least 3 months old when they had the operations, suggesting they were healthier to begin with.

The study was published Tuesday in the Journal of the American Medical Association.

A separate study from nine states found 5-year survival rates of 10 percent to 12 percent for trisomy 13 and 18 children. The highest rates were in those who had aggressive treatment, according to the research, published in April in the American Journal of Medical Genetics.

Despite the survival of some, an editorial accompanying the Canadian study says it is “ethically justifiable” to withhold aggressive medical treatment and let some infants die while offering aggressive treatment to others. Parents’ values should drive the decisions, said Dr. John Lantos, a medical ethicist at Children’s Mercy Hospital in Kansas City who wrote the editorial.

Lantos notes that 30 years ago, new doctors were taught that the two conditions were fatal, but “in the social media age, however, everything changed,” he wrote.

Sometimes support groups and imagery of surviving children give other parents false hope. But Lantos said it also empowers parents, “by allowing them to share stories, to compare doctors and to present their physicians with information that challenge medical literature,” he said.