Bioethics News

Kids with Trisomy 13 and 18 can have good quality of life

Former Senator Rick Santorum with daughter Bella in 2012   

Should babies with Trisomy 13 and Trisomy 18 be given life-sustaining treatment? Both conditions are associated with severe physical and intellectual disabilities and most die children in their first year. So until recently, few of them were treated. Doctors regarded the conditions as “lethal congenital anomalies”.

However, according to a surprising study in JAMA, the Journal of the American Medical Association, it turns out that the consensus was wrong. Bioethicist John Lantos, a former President of the American Society of Bioethics and Humanities, commenting on an article about the survival rates, says:

In the age of social media, however, everything changed. Parents share stories and videos, showing their happy 4- and 5-year-old children with these conditions. Survival, it turns out, is not as rare as once thought. Children who were not institutionalized looked happy, cared for, and loved. It became increasingly awkward to describe these conditions as incompatible with life to parents who had ready access to information showing that it was not true.

One of these babies was Bella, the child of Senator Rick Santorum, a former presidential hopeful. He and his wife were told ““You realize that your child is going to die. You have to learn to let go.” The Santorums did not follow the doctors’ advice; their daughter is now 8 years old and in a stable medical condition.

This story illustrates how predictions of lethality become self-fulfilling prophecies [writes Lantos]. If Bella had not received supplemental oxygen or cardiopulmonary resuscitation, predictions that she would die early in life would have turned out to be true.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.