Talking Trisomy
Videos and Podcasts
Expert conversations, family stories, and clinical education on Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome conditions.
Stories from Families Like Yours
Every family's trisomy journey is different. These conversations are from parents who have been where you are — navigating a diagnosis of Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), or Trisomy 9 and figuring out what comes next.
Raising Ivy: Life with Trisomy 9 Mosaic
In our most recent episode, Ivy's family shares what life looks like raising a child with Trisomy 9 mosaic — from the initial diagnosis through daily life, medical decisions, and the hope they hold for Ivy's future. A candid and moving conversation for any family navigating Trisomy 9 or a rare chromosome condition.
Ryan's Story: How One Trisomy 18 Family Helped Shape SOFT
Steve and Peggy Cantrell share their Trisomy 18 (Edwards syndrome) journey with son Ryan, the origin of SOFT's balloon tradition, and new research on light sensitivity, seizures, and nutrition.
Trisomy 9 Families and Experts: Stories, Research and Support
Families and medical experts discuss Trisomy 9, mosaic Trisomy 9, and Trisomy 9p — covering diagnosis, available research, community support, and the new Trisomy 9 guidebook from SOFT.
Caitlin's Story: A Mother's Journey with Trisomy 18
A mother shares her experience navigating a Trisomy 18 (Edwards syndrome) diagnosis and why connection to other families made all the difference. A candid conversation about what support really looks like.
What the New AAP Guidelines Mean for Your Family
Dr. Alaina Pyle and Dr. John Carey explain what the landmark American Academy of Pediatrics report on Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) means in plain language — and why it matters for families making care decisions today.
Share Your Story
SOFT is building a library of voices from across the trisomy community. If your family has been touched by Trisomy 18, Trisomy 13, Trisomy 9, or a related condition, we would love to hear from you.
Clinical Education and Expert Conversations
Interviews with clinicians, genetic counselors, and researchers on Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome conditions. Each episode includes a full written transcript and referenced resources.
Changing the Narrative: The AAP Report on Trisomy 18 and Trisomy 13
Nick Holladay sits down with Dr. Alaina Pyle, neonatologist, bioethicist, and lead author of the landmark AAP clinical report, and Dr. John Carey, SOFT co-founder and emeritus professor of pediatrics at the University of Utah. They discuss what the new guidance means for families, for clinicians, and for the future of care for children with Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome).
The Trisomy Care Collaborative at Lurie Children's Hospital
Dr. Natasha Henner and Grace Knowles discuss how the Trisomy Care Collaborative at Lurie Children's Hospital approaches coordinated care for Trisomy 18 and Trisomy 13 families, and what other clinicians can learn from the model.
Trisomy Awareness 2026: Medical Panel Q and A
Medical experts answer questions submitted by families about Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) care. Topics include surgical decision-making, life expectancy research, and palliative care options.
Trisomy 9: What Clinicians and Families Need to Know
An in-depth look at Trisomy 9, mosaic Trisomy 9, and Trisomy 9p — covering current research, how families receive a diagnosis, what clinical support exists, and the new SOFT Trisomy 9 guidebook.
Creating the New and Expectant Parent Books for Trisomy 18 and Trisomy 13
A SOFT panel discusses how the New and Expectant Parent Books for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) were developed — designed for the moment of diagnosis and built with clinicians and families together.
AAP Care Guidance for Trisomy 13 and Trisomy 18
The American Academy of Pediatrics released updated clinical guidance on Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) care. Read SOFT's overview and access the full report.
All Talking Trisomy Episodes
Every episode of the Talking Trisomy podcast, covering Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome disorders. Family stories, clinical conversations, and research updates all in one place.
Changing the Narrative: The AAP Report on Trisomy 18 and Trisomy 13
Dr. Alaina Pyle, lead author of the landmark AAP report, and Dr. John Carey on what the new clinical guidance means for families and for clinicians.
Creating the New and Expectant Parent Books for Trisomy 18 and Trisomy 13
A SOFT panel discusses how the New and Expectant Parent Books for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) were developed — who they are for, what they cover, and how to get them into the hands of families at diagnosis.
Raising a Child with Trisomy 9: Advocacy, Milestones, and Resilience
A parent reflects on what it takes to advocate for a child with Trisomy 9 — the milestones that matter, the resilience that grows, and what families can expect on the journey ahead.
