Trisomy 18 & Trisomy 13 | Changing the Narrative in Medicine | Dr Alaina Pyle & Dr John Carey | SOFT

Trisomy 18 (Edwards Syndrome) and Trisomy 13 (Patau Syndrome) have long been labeled “incompatible with life.”
In this in-depth conversation, Dr. Alaina Pyle — neonatologist, bioethicist, and lead author of the American Academy of Pediatrics (AAP) report — joins Dr. John Carey, medical geneticist and co-founder of SOFT (Support Organization for Trisomy), to discuss how new research, ethics, and shared decision-making are transforming care for these children and their families.

Hosted by Nick Holladay, Executive Director at SOFT, this podcast explores:

How decades of medical bias shaped care for Trisomy 18 and 13

What the new AAP guidance means for hospitals and providers

The importance of informed consent, family voice, and shared decision-making

Why every child — regardless of diagnosis — deserves compassionate, individualized care

“There’s no reason to treat a child with Trisomy 13 or 18 any differently than any other child who has medical challenges.”
— Dr. John Carey

Watch and share to help change the narrative.

📘 Read the AAP Report:
AAP Pediatrics Journal Article →https://publications.aap.org/pediatri...

AAP News Feature → https://publications.aap.org/aapnews/...

🌐 Learn more about SOFT and how we support families: https://trisomy.org

💙 Support the SOFT Conference 2026: “Love Lifts Us” in Loveland, Colorado → https://givebutter.com/QK9YIr

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