Statement from the Board of Directors of SOFT (Support Organization for Trisomy 18, 13 & Related Disorders)

[Rochester, NY, December 14, 2023] – The Board of Directors of SOFT, a leading organization
dedicated to supporting individuals and families affected by trisomy conditions, issues the
following position statement regarding the terminology commonly used to describe trisomy 18.

In light of the recent mischaracterization of trisomy 18 in news stories and articles related to the
Texas case (USA Today, 12/11/2023; Washington Post, 12/11/2023; NBC Today 12/11/2023), the
Board of SOFT is compelled to address the ongoing use of outdated language that inaccurately
portrays the condition. It is crucial to clarify the evolving understanding of trisomy 18 and
advocate for a more accurate representation in public discourse.

First and foremost, we would like to express our genuine sorrow and heartfelt compassion to Ms.
Cox and her family, who are at the center of the recent Texas case. We understand the
complexities and emotional toll that trisomy conditions can bring to individuals and their loved
ones. Our thoughts are with them during this challenging time.

We want to emphasize that we do not have access to the specific medical details of the Texas
case, and we refrain from commenting on individual circumstances. Our focus is solely on
providing clarity about the accurate description of trisomy 18 and challenging the outdated
terminology surrounding the condition that has been used in recent media reports.

For decades, the terms “incompatible with life” and “lethal” have been associated with trisomy
18, portraying this as an undoubtedly serious, and potentially life-threatening condition. Recent
news stories have characterized trisomy 18 as “deadly,” “fatal,” and “not viable,” among others.
However, recent advances in medical research, particularly through peer-reviewed papers from
North America and Japan, challenge this historical narrative. The data from these studies suggest
a significant shift in the landscape of trisomy 18 outcomes in live-born babies. Contrary to earlier
findings, one-year survival rates for infants are now 3-4 times higher, ranging from 12-19%. In
fact, the survival rate for these children increases to a rate of 30–50% with intensive intervention.

The Board of SOFT acknowledges that this improvement in survival is attributed to increased
hospitalizations and surgeries in children with trisomy 18 over the last 15 years. Technological
interventions, including cardiac surgery, in infants with trisomy 18 have played a crucial role in
contributing to this enhanced survival.

As advocates for accurate and compassionate communication, we disagree with the continued
use of the term “incompatible with life” for trisomy 18. The recent data underscore that trisomy
18 is often life-limiting, but the term “incompatible with life” no longer aligns with the current
understanding of the condition. It is essential to update our language to reflect the evolving
medical landscape and promote a more nuanced and informed dialogue surrounding trisomy 18.
“Incompatible with life” is incompatible with the data.

As an organization of families and medical professionals, we remain committed to providing
support, education, and advocacy for individuals and families affected by trisomy conditions.
Our mission for more than 40 years has been to support families on their trisomy journey. We
offer support by addressing and challenging the inaccurate language commonly used to describe
trisomy 18.

We encourage healthcare professionals, researchers, and the broader community to adopt
language that accurately reflects the current knowledge and respects the experiences of those
living with trisomy 18.

For media inquiries, please contact:
Dr. John Carey – Pediatric Geneticist, Founding Professional SOFT,–
Josh Bradley – President Elect SOFT –