Parents of newborns with rare genetic conditions used to hear that severe birth defects were "incompatible with life." Support groups and social media showing the exceptions have changed the landscape—and so has mounting research suggesting not all such babies will die, the AP reports. The latest study focuses on trisomy 13 and trisomy 18, genetic conditions involving extra copies of certain chromosomes that typically cause mental impairment, facial and organ abnormalities, and other issues. A study published Tuesday in JAMA that includes two decades of data from Ontario, Canada, illustrates how rare the conditions are and how even though most babies still die—of the 428 babies born, only 65 (less than 20%) lived for at least a year; 29 survived at least 10 years—there's little previous research on these kids surviving that long, and the new results suggest the birth defects aren't always as lethal as doctors have said. But online images of smiling kids with the conditions have given what some say is "false hope" to parents, causing them to seek aggressive and costly surgeries to correct organ abnormalities.
In the study, about 70% of the 76 infants who had surgery lived for one year afterward—but whether surgery prolongs survival is unclear, says Dr. Katherine Nelson, the study's lead author. A separate study from nine states found five-year survival rates of 10% to 12% for trisomy 13 and 18 kids, with the highest rates in those who had aggressive treatment, according to recent research in the American Journal of Medical Genetics. Despite the survival of some, an editorial accompanying the Canadian study says it is "ethically justifiable" to let some infants die, with parents' values driving the decisions. When Jared Hiner's daughter Kamdyn was born, doctors told him her chances of living past age 2 were bleak—but Kamdyn is now 14, mentally and physically delayed, but attending school and able to interact with her family. No one talks much about her future, but for the moment, "she's doing fantastic," her dad says. "I don't think [social media sites give] false hope. I think it's more realistic hope that, 'Hey, we can live with this,'" even when the future is uncertain.