By Dave Andrusko
Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”
I’m going to pick up here on the disquieting truth that these affirming observations are very different than that attitude of many pediatricians towards these conditions.
“Medical textbooks are grim and bleak about babies born with genetic codes considered ‘incompatible with life,’” Helen Branswell of The Canadian Press observed. “But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.”
A story in Reuters began with the observation that one in four parents felt “judged” when they want life-sustaining treatment for their newborns.”
“This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation,” says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax. “The negative narrative needs to change. Parents’ experiential knowledge matters and should be available to expectant parents and new parents.”
The study was conducted by ethicists and the mother of a child born with Trisomy 13.
Trisomy 13 is a genetic disorder in which a person has not two but three copies of genetic material from chromosome 13 in all the cells of their body. Trisomy 18 is a similar condition where the genetic abnormality relates to chromosome 18.
The American Academy of Pediatrics Neonatal Resuscitation Program and the American Heart Association guidelines recommend against resuscitating children with these conditions, according to the study. But the authors of the determined to find out what parents were thinking, and over 300 parents completed the survey. Branswell writes
“Most reported they’d been given a bleak picture of what their child’s life would be. …Nearly all the parents described their T13 or T18 children as a happy child, and said they were able to communicate with them to understand their needs.And virtually all the parents reported that the child had enriched their lives. In most families where there were other children, parents reported the T13 or T18 child had a positive effect on the siblings.”
Branswell story includes an extensive set of quotes from Barbara Farlow, whose daughter Annie was born with T13. “Farlow says she and her husband were realistic about their daughter’s condition, but wanted to love and care for her for as long as she could survive,” Branswell writes.
“Farlow hopes, though, that the study will help the medical community come to understand that there is more to these children than their current treatment reflects.
“It’s not easy, especially in our culture. But at least if they can meet the parents at saying ‘I do understand that this can be positive for people’ then I think that the communications will be better from there,” Farlow says.
“And that’s personally something that I really wanted to see resolved.”
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