Disabilities

 

Changing the “negative narrative” about unborn babies diagnosed with disabilities

By Dave Andrusko
Editor’s note. A friend who marched with KIDS (Keep Infants with Down Syndrome) last Thursday reminded me about this story.
“My abortion story,” which appeared on Salon.com, will rend your heart. And that will hold true regardless of where your opinion lies on the spectrum of abortion opinion.
The sub-headline to Jacqui Morton’s remembrance criticizes legislation that makes it possible for women to hear their unborn child’s heartbeat: “Hearing my little girl’s heartbeat would have been unbearable.” But if you read her piece carefully, there is a far different message tucked in between the tears and the regret.

Morton tells her readers she’d always been pro-choice but never planned to have an abortion. She reached an unexpected fork in the road when Morton learned her baby had Trisomy 18.
There is no reason to question that she and her husband wrestled with the decision. Nor that she cried and cried and cried some more. Morton wanted this baby.

In explaining how she came to abort, Morton writes about teaching her toddler son to make choices.

“When he doesn’t want to hold my hand in the parking lot, I tell him that sometimes we have to make the choice we don’t want to make because it is the right choice or because it is the safe choice. I knew that to mother this baby, I had to let go. I could not bring myself to ask if it was a girl or boy until after we had made our decision. I had always hoped for a daughter. I had already imagined her first day of kindergarten.”

No one would minimize the odds facing babies with Trisomy 18, certainly not me. Many babies will be stillborn and, according to Morton, “Less than 10 percent will have a first birthday.”
But it is unfortunate that Morton and her husband apparently had no exposure to families whose babies have (or had) Trisomy 13, no chance to learn from them what they learned by not aborting their babies.

For example (and this is just one example), we once ran a story about a study that was running in the Journal “Pediatrics.” 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.

Reporter Helen Branswell, writing in The Canadian Press, noted that

“Medical textbooks are grim and bleak about babies born with genetic codes considered ‘incompatible with life.’ 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.”

The study was conducted by ethicists and the mother of a child born with Trisomy 13.
A separate story, running in Reuters began with the observation that one in four parents felt “judged” when they want life-sustaining treatment for their newborns!

I thought of Morton when I re-read these quotes from the story:

“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.”

Morton concludes with a powerful remembrance of her aborted child and with the implied concession that the “post-abortion distress” she believes is only for women “left alone to cope with grief” has a wider audience: herself.

“I’ve heard that the DNA of our children lives on in our bodies for 21 years. I don’t know if that’s true. But I think of her every day.”