Parents of children with Trisomy 18 outraged over media’s false reporting

By Cassy Fiano-Chesser 

Parents of children with Trisomy 18 are outraged over the media’s false reporting of the condition amid the headline-dominating case of a Texas woman who sued the state, claiming she needed a “medically necessary” abortion after her child with diagnosed with the genetic condition.

Kate Cox has been at the center of media headlines for weeks as she was pregnant with a child diagnosed with Trisomy 18, or Edward’s syndrome, and chose to go out of state for an abortion after losing her lawsuit against Texas.

No longer ‘incompatible with life’

Cox’s child was declared “incompatible with life,” simply because she had Trisomy 18 — often due to outdated studies from data at least 20 years old. Trisomy 18 has not been considered “incompatible with life” since 2019, and research is proving that children with Trisomy 18 can survive as long as they are given the medical care they need.

Research out of the University of Michigan’s Mott Children’s Hospital has revealed that by “taking an aggressive approach to treatment, 90% of babies born with Edwards syndrome can go home from the hospital, and their five-year survival rate can reach close to 77%.” Trisomy 18 families in Michigan are frustrated at how Cox’s story has been portrayed by the media.

Media reports have been ‘hurtful’

In an article published by the Detroit Free Press, multiple families of children with Trisomy 18 have said the Cox case has been hurtful and has further perpetuated negative stereotypes towards children with Trisomy 18 — who can live if they are given the chance.

“When I read the articles about the Kate Cox case, the language that was used to describe Trisomy 18 — ‘not viable,’ ‘lethal,’ ‘fetal anomaly with virtually no chance of survival’— it really impacted me,” Jewel Calleja said. “Because it’s false information.”

Calleja’s daughter, CC, is four years old, has Trisomy 18, and has begun walking with the help of a walker. The Detroit Free Press noted that, while Trisomy 18 can cause respiratory failure, heart defects, club feet, and intellectual impairment, it is no longer a presumed death sentence, as “[h]earts can be fixed; airways can be opened.”

Pressure to abort

Yet moms are rarely given this information; to the contrary, they are often given worst-case scenarios and pressured to have an abortion, as Melissa Fox recounted. The Detroit Free Press reported, “That day, six years ago, the doctor told Fox that he’d never delivered a Trisomy 18 baby, but that one of his colleagues did once, and the child was born with no bones. It just came out in a puddle, he said. A lie? An old wives’ tale he actually believed?”

But the story got worse; after Fox said she did not want an abortion, she was called in for an “emergency appointment,” at which the consent paperwork for an abortion was printed and ready for her to sign. The papers were backdated by one day, to satisfy Michigan’s 24-hour waiting period requirement, and the doctor had already signed them. “I got your golden ticket,” he said. “This is my gift to you.”

Fox still refused to go through with the abortion, and every doctor she saw refused to promise they would give her child medical care after birth. “I think it was probably 32 weeks when I finally realized they’re not going to help me,” she said. “They’re not going to keep this baby alive.” One neonatologist even told Fox it would be a waste of time and money; others, including a heart surgeon, said they weren’t willing to do anything for a child who was “destined to die.”

Fighting for life

Eventually, Fox made her way to Mott Children’s, where everything was different. “There’s a lot of misinformation about a lot of those outcomes,” Dr. Collin Smith, a resident, said. Just five years ago, in medical school, Smith was told that babies with Trisomy 18 could not survive for longer than a year. “And I’m finding that that’s not the case,” he said. “We’re finding that with the proper support early on in life, we can really give them a great quality of life after they make it through the acute period.”

Another mom, Jennifer Lo Tiempo, was told her baby would not be able to breathe after birth; at birth, though, her son Danny was crying loudly. He’s now in third grade and thriving. “We were told that he would never even know who we are, that he would never know love,” Lo Tiempo said. “That is the most loving kid. He just knows love and he just knows happiness and I wouldn’t trade a single second.”

These families have begun fighting back, wanting to prove that the narrative — one perpetuated by Cox and the media — is wrong. Not only are their children capable of life, they are deserving of it.

“We’re a community that has banded together and become a family,” Lo Tiempo said. “I love the fact that we’re able to give hope to these other families, and other families come to me and say that Danny inspired them to fight for their child. That is the best thing that anybody has ever said to me [in] my entire life. That my boy can inspire somebody else to give their kid a chance when all the doctors are saying don’t bother.”

Editor’s note. This appeared at Live Action News and is reposted with permission.