Celebrating A Baby Without Down Syndrome Sends The Wrong Message: Advocates

U.S. Olympic Gold Medalist Shawn Johnson East and her husband, Andrew East, a football player with the Washington Redskins, are expecting their first child. In July they shared the emotional rollercoaster of finding out about some potential complications on their YouTube channel . 

This is not the first time the couple has publicly shared their tumultuous pregnancy journey. Last year, the couple had a miscarriage . 

With this pregnancy, following their 20-week ultrasound, the couple became aware of underdeveloped kidneys and a rare umbilical cord defect. Both of these complications can be indications of a Down syndrome diagnosis. 

Down syndrome, one of the most common developmental disabilities, is a genetic condition that affects about one in every 781 live births in Canada . The condition is a result of an extra chromosome 21, which affects cognitive development, muscle tone, and facial structures. 

“For us being such naive first-time parents, all you do is pray for the health of your baby,”  Johnson East said in her YouTube video,  which has been viewed more than 1 million times. 

The couple later discovered their child does not have Down syndrome but advocates are not celebrating the same way the media is . Multiple major outlets have picked up the story as a narrow escape from the supposedly devastating news. The couple, meanwhile, made it clear they would love their baby regardless of the outcome . 

The Today Show featured the story in an “uplifting” segment that focused on how the initial miscarriage had led to more disappointment this pregnancy. The segment has stirred controversy for perpetuating the narrative that it is a tragedy to have Down syndrome.  

The Avis family of Southern California believes otherwise. 

Heather and Josh Avis have adopted three children who have taken the Instagram world by storm . On any given day they can be found twirling and dancing their way through life. Two of the Avis children also have Down syndrome. 

With the adoption of their first child, Macyn, the Avis’ were fiercely whirled into the Down syndrome community. The family has since adopted Truly and August. Five-year-old August also has Down syndrome.  

Heather has since coined the term The Lucky Few  (also the title of her book) in an attempt to shift the Down syndrome perception from a place of loss to an asset. 

“It’s important for my kids, for their rights as humans, that they are fully valuable, fully worthy with Down syndrome. The fact that they have Down syndrome is actually an asset,” Heather Avis told Huffpost Canada. 

Avis said that her life is better because she knows people with Down syndrome.  

“I think humanity, as a whole is suffering greatly, because we’ve been sold this lie that we need to strive for perfection,” said Avis. She added that loving people who are different leads to living a more whole life. 

Avis points to her kids’ lack of inhibition as one of the most beautiful traits that often comes with a Down syndrome diagnosis. When they hear music they get up and dance, the way everyone wants to, regardless of if people are watching. 

Avis told HuffPost Canada that she will be appearing on the East family’s YouTube channel to speak about Down syndrome.  

Those entrenched in the Down syndrome community are not disappointed in the East’s reaction but rather the media’s response, Avis explained. They understand the fear and potential disappointment that comes from a diagnosis but Avis suggests that while those feelings are totally valid, they are likely rooted in the unknown future more so than the actual Down syndrome diagnosis. 

“Ask yourself, who do I know in the Down syndrome community? Do I have a close relationship with anybody who has Down syndrome? And if the answer is ‘no’, then there’s just so much unknown, and there’s so much fear and unknown,” Avis said.

For some, the weight of the potential complications is at the forefront. Those with Down Syndrome have higher chances of heart defects, vision and hearing issues among others.

However, Avis believes after meeting thousands of families with a Down Syndrome connection, they truly feel like the lucky few further down the road.

“What once started out as a scary, terrifying thing, they’ve gotten [to] the other side of things I really can say, ‘I feel so lucky that I get to have a child with Down Syndrome.’”

Down syndrome doesn’t have to be scary

In an open letter on the Canadian Down Syndrome Society  (CDSS) website, Tara McCallan recalls the moment her doctor, “with the saddest eyes possible,” told her that her daughter would likely have Down syndrome.

“Everything I ever hoped for my daughter, for my little family, for our life together seemed to die in that moment. It was as if in his words, that doctor took the entire happiness out of our new baby,”  McCallan wrote.

However, over time she has come to see the beauty in her daughter, who often goes by Pip. “A diagnosis can’t predict the extraordinary love you will have for your child . A genetic counsellor can’t understand the fierce value you place on your baby’s life.”

The CDSS urges medical professionals to congratulate the family , instead. They also ask that medical professionals focus on the positives. 

“Your first words to a family have a lifelong impact,” said the CDSS. 

“Changing my perspective has changed my life and I’m sure the life Pip is going to have. Now it’s my mission to prove to the world that we really are the lucky ones ,” McCallan wrote.

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