An influencer couple stirred controversy by sharing that they terminated their pregnancy due to a Down syndrome diagnosis, but advocates and researchers say their experience doesn’t tell the whole story.
YouTuber Jesse Ridgway and his wife, Ashley, said last week that they ended their pregnancy following amniocentesis results that were consistent with Trisomy 21, or Down syndrome.
Ridgway, who has over 4.3 million subscribers to his YouTube channel, said in a posting that it was a “very difficult decision” informed by conversations with doctors, friends, family and genetic counselors.
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“50% of babies with DS have heart defects. 75% will have hearing challenges. Over 50% will have vision problems. Impaired immune function, developmental disabilities, learning disabilities, delayed physical development, poor muscle tone, structural issues with face, decreased lifespan, etc. … Sadly, the list is long, feel free to look it up … Down Syndrome isn’t a ‘blessing’, it is objectively sh– from a health perspective. I didn’t realize just how rough it is for the child, let alone the family,” Ridgway posted.
The news generated significant attention, with the couple receiving both support from others who’d been through similar experiences and death threats.
But advocates with the United Coalition for Down Syndrome — which includes the National Down Syndrome Congress, the National Down Syndrome Society, Gigi’s Playhouse and the Global Down Syndrome Foundation — say the story “does NOT reflect the current medical understanding, lived experiences, and realities of people with Down syndrome and their families.”
While individuals with Down syndrome are prone to various medical conditions, they are often not as severe as Ridgway suggested, said Michelle Sagan, director of communications and marketing at the National Down Syndrome Society.
“Most hearing conditions can be improved with tubes, and most vision conditions can be treated with glasses. In addition, the survival rate for the most common heart defect is 97% and requires no additional surgeries throughout life,” she said.
Advocates point to research showing that people with Down syndrome are living longer, in many cases into their 60s and 70s, and that 99% of them are happy with their lives.
“While there are challenges, the greatest obstacles we face are often not Down syndrome itself but societal misconceptions, low expectations and discrimination,” said Summer Parrish, who has a 6-year-old daughter with Down syndrome and hosts a podcast dedicated to educating people about the disability community.
Madison Essig was the first person with Down syndrome to receive a regular diploma from the District of Columbia Public Schools and she got her degree from George Mason University even though others told her she couldn’t.
“There are a lot of people out there who have underestimated me, and I’ve had to push to be included in so many walks of life,” said Essig who now works at the National Down Syndrome Society and at a hair salon. “I graduated from college, have a full-time job, volunteer in my community, and pay taxes. I lead a rich and fulfilling life and am proud of who I am and who I continue to become. My story, and the story of so many others with Down syndrome, is a testament to what we can do when given the opportunity to belong and succeed.
The Ridgways’ situation is particularly concerning, advocates said, because research shows that many expectant parents aren’t given the full picture when they receive a Down syndrome diagnosis during pregnancy.
Stephanie Meredith conducted the largest study to date on the experiences of people who received a prenatal Down syndrome diagnosis. More that 60% of parents reported that their medical provider framed the diagnosis as bad news and fewer than 40% said their doctor provided accurate, up-to-date information about Down syndrome.
“If the Ridgways are conveying all of these falsehoods and made their decision based on these assumptions (not facts), then they were not provided with the care they deserved, and that’s heartbreaking,” Meredith said in a Facebook post. “And now the cycle is perpetuated on a huge social media platform and requires gargantuan effort from a small community to correct it.”
