Texas woman seeking abortion argued Trisomy 18 was lethal. Michigan children prove it's not.

At 20 weeks pregnant, Kate Cox sued the state of Texas seeking an exemption to its abortion ban, which denies the procedure to mothers whose lives are not in danger. Cox begged the court earlier this month to recognize that her unborn daughter, who, because of a rare genetic anomaly known as Trisomy 18, would likely not be born alive.

If the newborn did survive to take its first breaths, Cox was told, they would be numbered. The little girl’s time in this world would be defined as one thing: brief.

Cox was already across state lines for a legal abortion by the time the Supreme Court of Texas struck down a lower court’s ruling that she be allowed to terminate the pregnancy. And while advocates on both sides of one of the country’s most contentious political issues weighed in, the headlines drummed up a personal mix of sadness and indignation for a handful of families in Michigan. Their children are growing up with the condition Cox's doctors told her could not sustain life.

“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, a Livonia mom of five. “Because it's false information.”

New data could tell a different story

Calleja’s husband, Phil, pulls out his phone and replays the video of their daughter CC taking some of her first steps. She did so with the use of an adaptive walker, and the moment arrived at least three years later than parenting books advise babyproofing the house. But it happened.

CC is 4 years old. She loves lounging in the pool on summer days with her older siblings and rolling over for a back scratch while her favorite movie, "Moana," plays on the big screen mounted in the Callejas’ living room. She enjoys jazzy music and flashy toys, and when she’s especially happy, she kicks her legs and rolls her tongue out just a bit.

CC has full Trisomy 18, also known as Edwards syndrome; an extra copy of the 18th chromosome in each of her body’s cells results in severe disability. Prestigious health centers state that nearly 40% of babies with Trisomy 18 don’t survive labor and the ones who do have a 10% chance of celebrating their first birthday.

But CC lived. And she’s certainly not the only Trisomy 18 baby to make it home from the hospital, past toddlerhood and even into a preschool classroom. Though she is an anomaly, the oldest person living with Trisomy 18 is reported to be in her early 40s.

Trisomy 18 can cause respiratory failure, heart defects, club feet and intellectual impairment. But some of those conditions are treatable. Hearts can be fixed; airways can be opened.

Research coming out of the University of Michigan’s Mott Children’s Hospital is showing 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%.

Pressure to end the pregnancy

That’s a far cry from what Melissa Fox was told would happen if she delivered her baby, whom her obstetrician didn’t even want to announce was a girl after confirming the Trisomy 18 diagnosis. He just apologized repeatedly for their loss.

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?

Doctors initially didn’t pressure Fox to terminate the pregnancy. They just assumed she would. The Support Organization for Trisomy 18 says 75% of U.S. women and 90% of European women carrying T18 babies do.

They seemed totally floored — upset, even — when Fox said she wanted to carry her baby to term. The supervising obstetrician called Fox in for an emergency appointment where she presented the informed consent paperwork Fox would need to sign 24 hours prior to having an abortion.

The doctor had predated the papers by a day and signed them as a witness. Fox saw her own name had been electronically signed on each page despite the fact she’d never seen them before. “I got your golden ticket,” the doctor told Fox. “This is my gift to you.”

'They’re not going to keep this baby alive’

Fox didn’t go through with the procedure. For weeks, as her pregnancy ticked along, she kept waiting for her medical team to offer one assurance: that when her baby was born, they would do everything in their power to save it.

“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.”

Fox met with a neonatologist at the hospital who confirmed her fears. Keeping her baby alive would be a waste of the team’s time and resources, he explained. He wouldn’t give Fox a straight answer when she demanded to know whether her baby would be marked “do not resuscitate” against her wishes. According to the neonatologist, a third of the doctors on his team flat-out refused to perform a code on Fox’s infant if it went into cardiac arrest or stopped breathing.

Same from the pediatric heart surgeon Fox met with, who admitted she performed curative surgery on other babies with similar heart conditions but wouldn’t bother doing it for Fox’s baby. She didn’t want to risk her career and her center’s impressive survival statistics trying to save a baby who was destined to die.

Misinformation that robs families of hope

Fox finally transferred prenatal care to C. S. Mott Children’s Hospital, where the reception she received felt too good to be true.

Dr. Glenn Green works at Mott as a pediatric otolaryngologist with a special interest in congenital syndromes. He says aggressively treating their cardiac and pulmonary disease can keep T18 babies alive for much longer than the medical community has long held true.

Even among physicians, "There's a lot of misinformation about a lot of those outcomes,” said Dr. Collin Smith, a resident physician in Mott’s otolaryngology program who works with Green.

Just five years ago, as Smith was finishing medical school, he was taught that the average life expectancy for babies with Edwards syndrome was less than one 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.”

Calleja, CC’s mom, thinks if more doctors understood that, then kids with Trisomy 18 would get better care.

“There are definitely cases that have so many severe medical issues that they don't survive even with interventions, but that is not true across the board,” Calleja said. “And it's really sad that a lot of times these kids are just seen as a diagnosis and put in that box without actually being seen as individuals.”

Now the challenge is getting enough data to show doctors that early support for these babies can add years to their lives. It’s a small sample size given the rarity of the syndrome, but Green sees patients he has taken care of as infants who are now in their early teens. He and Smith want other medical professionals to realize the language used to describe Trisomy 18 as incompatible with life is damaging.

“Hope is probably one of the strongest things that we have as clinicians that we can give to our patients,” said Smith. "But hope is something that can be easily taken away with not having enough data and not really knowing enough about the patient population.”

When all the doctors are saying don’t bother

Many parents of kids with Trisomy 18 find hope and community in one another — even before their children are born.

Jennifer LoTiempo and her husband were devastated when they learned at 30 weeks their son had the syndrome, and a maternal fetal medicine doctor told LoTiempo their baby would never take a breath outside of her. But LoTiempo’s online research showed other kids with Trisomy 18 “surviving and doing amazing.”

Danny was born loudly crying — LoTiempo joined him in that emotional moment — and continued to thrive. He didn’t seem to have all the defects the doctors had predicted. It hasn’t been easy, but he’s currently a third grader whose friends push him down the hallways in his wheelchair and who thinks burps and farts are hilarious.

“We were told that he would never even know who we are, that he would never know love,” LoTiempo said. “That is the most loving kid.” When she picks him up from school, the first thing Danny does is throw his arms around LoTiempo’s neck. “He just knows love and he just knows happiness and I wouldn’t trade a single second,” she said.

Now she shares Danny’s story, sending one more hopeful data point out into cyberspace while also connecting with families near and far whose children have Trisomy 18. They offer support with words and messages and videos. And sometimes, by flying across the country for a funeral.

“We’re a community that has banded together and become a family,” LoTiempo 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 my entire life,” she said. “That my boy can inspire somebody else to give their kid a chance when all the doctors are saying don’t bother.”

Jennifer Brookland covers child welfare for the Detroit Free Press in partnership with Report for America. Make a tax-deductible contribution to support her work at bit.ly/freepRFA. Reach her at jbrookland@freepress.com.

This article originally appeared on Detroit Free Press: Kate Cox Trisomy 18 Texas abortion case frustrates Michigan parents