Study shows severe birth defects are not as lethal as docs once said

Parents of newborns with rare genetic conditions used to hear the grim words that the severe birth defects were "incompatible with life." Support groups and social media showing the exceptions have changed the landscape. So has mounting research suggesting that not all such babies are doomed to die.

The latest study focuses on trisomy 13 and trisomy 18 — genetic conditions that typically cause mental impairment, facial and organ abnormalities, breathing problems, heart defects and other medical problems. They involve extra copies of certain chromosomes. The study was published Tuesday, July 26 in the Journal of the American Medical Association.

Two decades of data from Ontario, Canada, illustrates 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.

The study doesn't include information on survivors' quality of life, but severe disabilities are the norm. The researchers say without that information, the study alone can't guide decisions about how to treat children with the conditions.

Online images of smiling kids with the conditions has led some parents to doubt the dire warnings and seek aggressive and costly surgeries to correct organ abnormalities. Ethicists say the power of social media is changing the landscape for how the medical community views these children, although some still say it is acceptable to let newborns with the conditions die.

Read the full story via The Associated Press.

Learn more about the Children’s Mercy Bioethics Center.