Friday, February 9, 2018

While cute, Gerber's baby unlikely to prompt major social change

By Louise Kinross

CBC’s The Current ran an interesting series of interviews this morning about Down syndrome and some of the conflicting messages we hear about it.

The host noted that Gerber’s new ad campaign (above)—where they named a child with Down syndrome as their Gerber Baby for 2018—comes at a time when genetic testing is more sophisticated and most women terminate when they receive a prenatal diagnosis of Down syndrome.

David Perry was one of the people interviewed. He’s an American dad to an 11-year-old with Down syndrome, a professor and a columnist with Pacific Standard magazine.

“Although the Gerber Baby is super cute,” he said, “I’m very skeptical that it’s a particularly significant moment in the long journey towards acceptance and inclusion for people with Down syndrome, and disabilities more generally.”

David noted that in 2012, Target and Nordstrom both had ads featuring “a really cute white toddler with Down syndrome,” but it hadn’t led to any significant improvements in everyday inclusion for kids with disabilities.

Parents “need information about schools and supports and jobs and life-long inclusion,” David said. “I’d like to hear Gerber say we’ll be employing thousands of people with Down syndrome,” or supporting families whose children have complex medical food needs. “What is the next step?” he asked, “and what is Gerber doing about it?”

Ironically, Liz Atkinson of Burlington, Iowa posted on Facebook yesterday that Gerber Life Insurance, an affiliate of the Gerber brand owned by 
Nestlé, does not cover children with genetic conditions. Her son was denied coverage when she applied from the neonatal intensive care unit in 2014. She explained that when her son was born prematurely with a chromosome disorder, NICU staff advised her to apply for insurance for him, in case he died and they had to pay burial fees. “Good enough to be the company’s face, but not good enough to insure,” she wrote. 

She explained more in this Facebook video.

However, Nestlé US tweeted: "Gerber Life does insure many children with Down syndrome as well as other conditions.

It would be great to know Gerber Life's specific criteria for when they will, or won't, cover a child with a genetic condition.

Stories in The Mighty and Business Insider suggested Gerber Life had a history of denying coverage to children with Down syndrome.

Also interviewed on CBC this morning was Vardit Ravitsky, an associate professor of bioethics at the University of Montreal. She spoke about the ethical implications of prenatal testing.

“Knowledge is power,” she said, “but it can also be vulnerability.”

She noted that when parents receive a prenatal diagnosis ‘you’re not well-informed, you didn’t get the full picture, and you’re under time pressure because the pregnancy is moving along.”

She said the way a diagnosis of Down syndrome is presented to parents is often not balanced.

“Studies have shown clinicians, when it comes to Down syndrome, really focus on the health complications and they’re not usually well equipped to give the full picture…” she said. “Some of the clinicians have never met a kid with Down syndrome. It’s not in their lives, and it’s not necessarily part of medical education and they don’t have the tools to discuss the full picture with women.”

Vardit said through the Pegasus research project she’s developing resources for pregnant women and clinicians that include interviews with families raising children with Down syndrome.

“My main message is that testing must be a decision that is completely informed, supported and free,” Vardit said. “A free choice means that if you reject testing, you won’t be criticized or judged…Once the child is born, we have to create a society that’s not just looking for the cute babies, but that really supports families through the life cycle...”

Sadly, we heard this week that a British inquest into the death of a 33-year-old man with Down syndrome found gross failures in his care, both in the care home he lived in, and in his hospital treatment. Richard Handley died in 2012 from a preventable and treatable condition—constipation—after having 22 lbs of fecal matter surgically removed. His family said his stomach was so distended he looked like he was 40 weeks pregnant. But no one acted at his care home, until it was too late. Six months later, another person with intellectual disability died of constipation at the same hospital.

David noted on CBC that “the Gerber ad is getting a huge wave of publicity across social media and mainstream media…” But “what is the next step” in the treatment of people with Down syndrome, and other disabilities, over a life time?


I wrote about this too! I heard The Current and wished they dug deeper into one or two issues, which are disability issues, not just Down syndrome ones. Ethical issues are murky.

I felt like a cranky, jaded mom afterwards. I know many new families are so excited about this news, so I don't want to pop their balloons. I think I'm tired of trying to change a world that doesn't want changing. I'm just concentrating now on helping my son have a rich and full life - whatever that means to him (which might mean something different to him than to me - that part is hard too).

And Gerber is owned by Nestle, ugh.

So much to say...thank you Louise for such a well-reported article.

The bioethicist repeats the tired trope that parents who choose to terminate are somehow uninformed and if the doctor only showed the “whole” picture, people would choose not to. The reality is that most are very informed and take everything into consideration when making the difficult choice, which is in fact their choice.

Their "choice" to kill an otherwise healthy child merely because of an extra chromosome. That is a lack of humanity and dignity and elitism.