‘This baby is a gift’: Trisomy 18 Awareness Day reminds us that every life is sacred

Beverly Jacobson and her daughter Verity. / Credit: Courtesy of Beverly Jacobson

Washington, D.C. Newsroom, Mar 18, 2025 / 14:10 pm (CNA).

When Beverly Jacobson first learned that her unborn daughter Verity would be born with the rare genetic condition trisomy 18, she “was filled with fear and anxiety” — but just three weeks ago the family was able to celebrate Verity’s eighth year of “lots of smiles and giggles and pure joy.”

“Just a happy little girl,” Jacobson told CNA. “We love her.”

Verity turned 8 years old on Feb. 28, less than three weeks ahead of Trisomy 18 Awareness Day, which is celebrated nationally on March 18. Her condition, also called Edwards syndrome, occurs when a person has an extra chromosome 18.

Her name, Jacobson said, derives from the Latin word “veritas,” which means “truth.” She and her husband had considered the name before the diagnosis, but Jacobson said the name choice “was just solidified once we knew that she had this condition” because they wanted her name to “speak truth to the value of all human life.”

“She also is made in the image of God just like every human being, and she’s worthy of life,” Jacobson said.

Some complications often caused by trisomy 18 include growth deficiency, eating difficulties, breathing difficulties, heart defects, facial malformations, skeletal deformities, and intellectual development delays, according to the National Organization for Rare Disorders.

In Verity’s case, she is nonverbal, has developmental delays, cannot feed herself on her own enough to sustain herself, and needs help to move around. Yet, as Jacobson puts it, “she’s really thriving in her own special way.”

Although Verity is nonverbal, Jacobson said this “does not mean noncommunicative” and that it is easy to tell when she is happy or irritated. Like other children, she has her favorite toys, enjoys music, and “has a sense of humor,” Jacobson explained. 

“She loves being outside, she loves the wind in her face,” Jacobson said. “It’s so cute.” 

Verity also “loves having people in her face — the people she knows,” Jacobson added. She also recounted stories about how children at Verity’s school play with her and “completely accept her,” saying it’s good to know “she is a part of their lives.”

Jacobson noted her relationship with her daughter also helped provide a better understanding of God’s sacrificial love for humanity, noting that Verity is “never going to be able to serve someone else in that physical way and yet we love her so completely.”

“Going from that state of fear … and just depression to where I am today — it’s 100% God’s work in my life through Verity,” Jacobson said. “Verity is his vessel to teach me more about the gift to lay down your life and sacrifice for someone else.”

“I feel by far the joys and the blessings outweigh the difficulties because now we’ve grown and we’re all stronger,” Jacobson said. “We’re used to a new normal.”

“God seems to send us children with disabilities to help us grow, to remind us that every soul is of greater importance than its frail body, and to teach us how man’s highest calling is found in his God-like possibility of sharing unconditional love,” said National Catholic Bioethics Center senior ethicist Father Tadeusz Pacholczyk of babies like Verity, pictured here as a newborn. Credit: Photo courtesy of Beverly Jacobson

She said her message to families faced with this type of diagnosis is to let them know “they’re not alone” and that their child “is not a mistake” and that finding “a community that can help you is so, so important.”

Jacobson also launched the nonprofit Mama Bear Care to provide a community for families whose children are diagnosed with rare genetic disorders. The organization also helps the families connect with doctors and other resources to ensure those children receive necessary care.

“This baby is a gift and not a mistake,” she said. “I really think that Verity’s life has so much value and serves a greater purpose. … I’m selfishly grateful that I get to be her mom.”

*Countercultural advocacy for recognition of human dignity*

When Jacobson was still pregnant with Verity, a common phrase she heard from doctors was that trisomy 18 was “incompatible with life” and that if she did not die in the womb, they “just indicated she would pass away within five to 15 days,” Jacobson told CNA.

“[Verity is] very compatible with life,” Jacobson said, despite the doctors’ warnings. “Living a great life.”

A large percentage of unborn children diagnosed with trisomy 18 die in the womb, and the ones who survive to birth only have about a 5% to 10% survival rate after their first year. Tragically, many of the children who would be born are not given the opportunity to fight for their lives because the post-diagnosis abortion rate is higher than 85%, according to a 2012 study published in the Orphanet Journal of Rare Diseases.

Father Tadeusz Pacholczyk, a senior ethicist at the National Catholic Bioethics Center, told CNA that doctors should stop using phrases like “lethal diagnosis” and “incompatible with life,” calling those terms “disparaging” and saying they are “incredibly difficult for the newborn’s parents to hear and process.”

Father Tadeusz Pacholczyk is a senior ethicist at the National Catholic Bioethics Center. Credit: "The World Over with Raymond Arroyo"/EWTN News screenshot

“Medical professionals should not view such a child as ‘less of a person’ because of his or her disability,” Pacholczyk said. “They need to remain resolute about treating such children with the same dignity and respect as any other child. It’s a travesty when some parents have to contend with a doctor who will not even address their child with a disability by his or her name.”

Jacobson said, like with other genetic conditions, “there’s often a spectrum” for how trisomy 18 will affect a child, adding that doctors “don’t know how this is going to present.”

Despite this, Jacobson said the doctor who provided the diagnosis for Verity “was very clinical” when explaining the condition and “referred to [Verity as] ‘the fetus’ and ‘it,’ instead of ‘the baby’ and ‘she.’” The family then met with a specialty doctor who told Jacobson and her husband that Verity would have a “futile life” and would be a “drain on the family” financially and emotionally.

“It took away from the humanity of my growing daughter who was kicking and very much alive inside of me,” Jacobson said.

Jacobson noted the specialty doctor callously referred to her daughter as “retarded,” which she said “was very hurtful,” adding: “I cried.” Yet, she said the coldness from the doctors motivated her to fight harder for Verity and give her “every opportunity to live.”

“When I heard those words, it was like mama bear woke up and I felt this fierce protectiveness that Verity’s life matters,” she added.

Pacholczyk said that many parents who face these diagnoses “quickly figure out they will have to become vigorous advocates for their children with disabilities.” 

“Parents in these situations rejoice when they can link up with an exceptional team of physicians who are hopeful and positive about their disabled child’s life and possibilities,” he said.

Conditions like trisomy 18 have also been used by pro-abortion activists to justify expansions to the procedure in states that have enacted pro-life protections for unborn children, including ones with genetic conditions. 

In December 2023, a woman named Kate Cox sued Texas because state law would not allow her to abort her preborn child who was diagnosed with trisomy 18 in the womb. She ultimately left the state to obtain an abortion elsewhere. Much of the media coverage at the time similarly portrayed the diagnosis as “incompatible with life.”

Jacobson said she feels “so much compassion for Cox,” adding: “I’m sure she’s experiencing a lot of emotional trauma and she’s not going to be able to talk about it honestly” because of how pro-abortion activists and the media used her story.

“Many families are experiencing that pressure to abort appointment after appointment,” she added.

Pacholczyk said that “discrimination against those with disabilities should never be allowed to gain a foothold in the medical profession, nor be allowed to guide public policy.” 

“The true measure of the greatness of a society will always be in terms of how it treats its weakest members, and the authenticity of our own love will be measured by our compassion and acceptance of the disabled and the powerless,” Pacholczyk said. 

“God seems to send us children with disabilities to help us grow, to remind us that every soul is of greater importance than its frail body, and to teach us how man’s highest calling is found in his God-like possibility of sharing unconditional love.”