Some Say Trisomy 18 Babies Are ‘Incompatible With Life’ — Those Who Love Them Say They’re Made for Joy
Special babies, children and young adults are a blessing to their families and communities, say their parents, who often must advocate for their children to receive medical care.
In December 2022, an amniocentesis revealed that Colt and Tara Emerson’s baby, Deacon, had full Trisomy 18, a chromosomal disorder that often results in birth defects, including delayed development and intellectual disabilities.
In sharing their diagnosis, doctors told the College Station, Texas, couple “a myriad of things that could be going wrong,” recalled Tara, 43. The Emersons’ baby may not be born alive, or he would die very soon after birth, they said. If he did live, he would require a lot of medical intervention.
The medical staff offered little hope but offered to help the Emersons abort Deacon, despite Texas’ abortion bans. The couple, who are practicing Christians with four other children, oppose abortion, but Tara admitted that with the hopeless and even terrifying outlook they’d been given, it was all difficult to work through.
Many parents receive equally bleak prognoses when their babies are diagnosed with Trisomy 18 and other fetal anomalies. This includes Justin and Kate Cox, another Texas couple whose baby last year was identified as having full Trisomy 18. By seeking a medical exception to Texas’ three abortion bans so she could abort her child in the Lone Star State, Kate Cox became the center of a high-profile challenge to Texas abortion law in late 2023.
The bias against babies with disabilities, including those with Trisomy 18, along with the sometimes-unfounded claims that being pregnant with these children endangers their mothers’ health, belie the fact that when children with Trisomy 18 are given hope and medical care, especially early, many thrive. And each of them offers blessings to their families and communities.
“I feel like if I could speak to anything, it would be that I really wish somebody had told me that it was okay to have hope that my baby would live to see Christmas,” said Tara, who held onto that hope during pregnancy as she worked on Deacon’s Christmas stocking.
Now about 8 months old, the Emersons’ “miracle baby” did celebrate Christmas with his family. He’s now 13 pounds, has had several surgeries and gets feeding assistance, his mother explained.
Caring for Extra Chromosomes
Chromosome disorders are caused by an alteration in the number or genetic structure of chromosomes, according to the Rochester, New York-based Support Organization for Trisomy 18, 13 & Related Disorders (SOFT).
Trisomy (“three bodies”) means the affected person has 47 chromosomes instead of 46. Humans usually have 23 pairs of chromosomes, with two sex chromosomes that decide gender and 44 chromosomes that dictate other factors, such as growth and function.
The most common forms of trisomy are: Trisomy 18 (Edwards syndrome), where an extra Chromosome 18 is present; Trisomy 13 (Patau syndrome), with an extra Chromosome 13; and Trisomy 21 (Down syndrome), characterized by an extra Chromosome 21.
Trisomy 18 can affect all or some of the cells in the body, or can manifest as a rearrangement of part or all of one chromosome that attaches to another chromosome. Its major impacts can include birth defects, malformation of cardiovascular and other organ systems, infant mortality, and developmental and motor disability in older infants and children, according to SOFT.
A prenatal diagnosis of Trisomy 18 often comes with advice to abort, a choice that 75% of U.S. parents and 90% of European parents decide to make, according to SOFT.
Cox reportedly left Texas in December to abort her child in an undisclosed state, and now 22 women are listed as plaintiffs in the legal challenge seeking clarification on medical exceptions to Texas’ abortion bans, according to the Dallas Observer.
Around the time that Cox was seeking to abort her child because of a Trisomy 18 diagnosis, Josie and Rico Simental and their other five children were grieving the loss of their daughter and sister, Magdalena, who died from Trisomy 18 complications before birth.
“We knew we were staring down a grim diagnosis,” Josie Simental said. “I told the doctor, ‘Every day we carry her will be a blessing, and we’ll take that.’”
The Catholic family lives in Hill City, South Dakota. Following Magdalena’s Christian burial, the family is still “leaning into prayer and leaning into each other,” said Josie, who, at 31, is the same age as Cox.
Simental’s pregnancy with Magdalena was her fourth, and her doctor never mentioned health risks in carrying a Trisomy 18 baby, she said.
While Trisomy 13 and 18 infant mortality is high overall, a 2022 study of a Cincinnati-area cohort that had received prenatal and postnatal diagnoses showed that after receiving varying degrees of medical support, nearly 20% of the babies lived for more than a year.
Dr. Mary Paquette, a family physician with an obstetrics speciality, who practices at AALFA Family Clinic in White Bear Lake, Minnesota, said she was told in medical school that all Trisomy 13 and 18 babies die and that any intervention makes no sense.
“In my experience, most people are told to have an abortion or induction [vaginal delivery]; why go through the pregnancy if the baby will die?” said Paquette, who said in her roughly 28 years in practice she couldn’t comment on how many of her patients have had children with Trisomy 18 but that none of the children have survived long after birth.
The extent of trisomy complications can’t be fully determined until the child is born, but specialists can treat some of the problems, she said.
For those babies who don’t survive childbirth or live only a short time after birth, families treasure the time they do have with their child, Paquette said. “There’s no easy way, but there’s so much healing if any live for a short time.”
As more parents advocate for medical treatment for their children with Trisomy 18, especially during their early development, they are living longer. A 2017 study showed a median survival rate of more than 16 years for Trisomy 18 patients who received heart intervention. A woman believed to be the oldest known person in the U.S. with Trisomy 18 turned 40 in 2020.
Brandon Bosma, 26, is diagnosed with mosaic Trisomy 18, meaning that roughly 70% of his cells have the additional chromosome. The condition mostly affects how quickly he processes speech and other information, Bosma said, but it hasn’t stopped the Ardrossan, Alberta, Canada, native from advocating for others with Trisomy 13 and 18.
Through public speaking and other efforts, Bosma seeks to show that the two syndromes are not “incompatible with life” — a label commonly used to describe them.
“Unfortunately, what they teach a medical student is just one side of it,” said Bosma, whose talks include a TEDx youth talk. “They don’t teach the other side: that people like me do survive.”
Monica O’Brien’s 22-year-old son, Michael, has faced challenges because of his mosaic Trisomy 18, but “he’s basically defied a lot of the odds,” she said of her son, who has a job and a girlfriend and loves ballroom dancing.
O’Brien, of Newtown, Connecticut, found out about Michael’s condition after his birth when he stopped breathing. Doctors said Michael might not survive, and, if he did, he’d never walk or talk and would have severe learning disabilities, she said.
One problem was that Michael’s esophagus hadn’t fully developed, but surgeons were able to stretch and repair it. His esophagus continued to require stretching as he grew, and he coughed often, she said.
Michael later communicated to his mother that the Blessed Mother came to him at night and held him while pounding on his back, the same way that Monica did to loosen phlegm and mucus that collected because of the condition of his esophagus. Since then, further surgery has brought relief, his mother said.
At 15, Brad and Jesi Smith’s daughter, Faith Victoria, has also defied the odds by possibly being the oldest person with Trisomy 18 in the state of Michigan, mom Jesi said. But she lives with the long-term consequences of doctors neglecting or delaying treatments for her jaw, sleep apnea, heart, scoliosis and gastrointestinal issues because she is disabled, said the Smiths, who have four older children and live in Rochester Hills, Michigan.
Many children with Trisomy 18 need a relatively simple surgery to repair their hearts, dad Brad explained to the Register. “But most places don’t even want to do that; they’ll deny these kids heart surgery.” They consider the medical care too expensive for the disabled, even though children with disabilities actually inspire doctors and researchers to innovate, he said.
Because the majority of children with Trisomy 18 are aborted, the medical community has no care standard for them, Jesi said. “They often will talk about quality of life, and that’s where we have to say, ‘Look: Not only is she content and happy and valuable to our family, she’s a great sister, she’s a wonderful daughter; she has a place in this world, and it’s a good one,” she said.
Tracy and Stephen Hayden’s daughter Taylor would be 17 now, but she lived just six days after her 2006 birth, mostly because half of her heart didn’t develop, said mom Tracy, 40. The couple live in Huntington, Maryland, and have seven other children. A first cousin of Stephen’s is Franciscan Missionary of the Eternal Word Father John Paul Mary Zeller, who serves as EWTN’s employee chaplain.
When a doctor quickly suggested an abortion after giving the Trisomy 18 diagnosis at 18 weeks, Tracy recalled to the Register, “I looked square at him, and I said, ‘My husband and I are Catholic. This is my child, and I will not abort her.’”
Under a more supportive doctor’s care, the rest of Tracy’s pregnancy was normal, except that Taylor stopped growing at seven months gestation, her mother said. Each day, she said, “I was just happy that I got another day with her.”
Tracy delivered her daughter by C-section, as she has done successfully with all her children. And the family had precious days with their precious baby.
“I look at my husband and I tell him for her to make it six days with just half of a heart, it was amazing,” she said, noting that the family consider Taylor a saint who is still a part of their lives.
In a 2012 American Academy of Pediatrics study of more than 350 parents of children with Trisomy 13 or 18, 89% said parenting their child was a “positive, enriching experience regardless of lifespan.”
Tabitha Enzminger’s five older brothers and sisters love her; and because of their sister’s different needs, her siblings are more comfortable in general around “differently abled individuals,” said Tabitha’s mother, Sandi Enzminger, 48, of Eagle, Idaho.
“They gravitate toward them, and they walk up to them and ask them what their superpower is and talk to them, so it’s not anything out of the ordinary.”
Tabitha was born five years ago with Trisomy 18 and a heart defect that was corrected early, Sandi said. Initially, doctors steered her and her husband toward comfort care and deciding when not to resuscitate rather than correcting problems, she said.
But even with suffering from Trisomy 18, “there is joy there at every child being conceived,” Jesi Smith said. “You find out and … I believe all heaven rejoices. This is a special individual that God created, and they are to be celebrated.”