Unfortunately and inaccurately, the phrase "incompatible with life" still shows up around trisomy 13 and trisomy 18, even as survival data, clinical experience, and professional guidance continue to evolve. We sit down with two leaders who have helped shape a more accurate and humane standard of care: Dr. John Carey, longtime clinical geneticist and SOFT co-founder, and Nick Holladay, president and CEO of the Support Organization for Trisomy (SOFT).

We talk through what families were told decades ago, what has changed, and why the most important shift is simple but hard: replacing assumptions with evidence and individualized care planning. Dr. Carey walks us through the research and the real-world clinical changes, including growing openness to interventions like feeding support and selected cardiac surgery, alongside the essential role of pediatric palliative care teams that support families no matter what they choose. Nick shares what it’s like to lead SOFT in a moment where parent stories and clinician collaboration are accelerating change, including practical resources like trisomy 18 and trisomy 13 booklets, birth plans, and peer mentoring.

We also get honest about why inconsistency still happens across hospitals, how bias and ableism can shape counseling, and what genetics professionals, OB teams, and neonatal providers can do to deliver accurate, balanced, up-to-date information from the first phone call. If you care about disability equity, patient-centered genetics counseling, or improving prenatal diagnosis experiences, this conversation is for you.

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Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/