A popular YouTuber set off a bombshell of controversy when he shared news about his wife’s pregnancy on social media. Jesse Ridgway announced his wife’s amniocentesis tested positive for Trisomy 21. Their baby would be born with Down syndrome. They made the decision to abort the fetus due to the prospect of raising a child with lifelong disability. Ridgway and his wife have 4.3 million followers on YouTube, and their 2,300 videos have been viewed more than 2 billion times. The news was reported heavily in the media, including the New York Times. The Ridgways gave some of their reasoning in a post on X (Twitter):
[T]hat 50 percent of babies with Down syndrome have heart defects, 75 percent have hearing challenges and more than 50 percent have vision problems. “Down syndrome isn’t a ‘blessing,’”
Mr. Ridgway added:
it is objectively s—ty from a health perspective,” “I didn’t realize just how rough it is for the child, let alone the family…more often than not, they would be fully dependent on others for the rest of their life.”
His post struck a nerve. Within a week the post was viewed 22 million times. It also generated thousands of comments, some supporting him, some critical and even death threats. The New York Times reported:
Every year, about 6,000 babies are born in the United States with Down syndrome, according to the National Institutes of Health. Some people with Down syndrome have other medical problems, such as congenital heart defects, hearing loss or sleep apnea. Over the past 25 years, the average life span of people with Down syndrome has doubled, from 30 years to 60, but people with the condition still face significant health challenges.
The Ridgways’ decision was not unusual. Among pregnant women in the United States who receive a Down syndrome diagnosis, about 74 percent choose to terminate the pregnancy, research shows. That figure is even higher in some other countries, such as Iceland, where almost all such pregnancies are aborted.
Ridgway believes that we rarely hear of families seeking abortions after a Trisomy 21 diagnosis because those who make the decision do so in private. They rarely speak about it. He said:
“I believe that’s because most terminations happen privately [and] it feels shameful. A lot of judgement being cast.”
Ridgway was surprised to discover their decision was not unusual. I suspect in many people’s minds the Ridgways’ failing wasn’t taking the usual path so much as deciding to share the unspeakable news with the world.
A while back I read about a research scientist who had a daughter with Downs syndrome. He wanted to study the disease and perform research on potential gene therapies. The scientist found that funding for Down syndrome research is difficult to obtain, because there just isn’t much grant money available. One reason donors do not fund research in treating Trisomy 21 is because donors view abortion as a solution. In addition, Trisomy 21 involves an extra copy of chromosome 21. A gene therapy would be difficult to develop because the extra chromosome is present in every cell of the body. To silence the additional chromosome 21 would require silencing trillions of copies. Something else that changed the trajectory of research on Trisomy 21 is Cell-free DNA screenings that analyze traces of fetal DNA in the mother’s bloodstream. The test can be done weeks earlier than an amniocentesis. In some European countries Down syndrome has been nearly eradicated through abortion. Advocates for Down syndrome sometimes lament that the community is being decimated by abortion, leading to less peer support for families caring for a member with Down syndrome. Numerous states have passed laws or debated legislation making it illegal to seek an abortion due to Down syndrome.
Slate: How Down syndrome is redefining the abortion debate.
NYT: YouTuber and Wife Ended Pregnancy After Down Syndrome Diagnosis. They Got Death Threats.