Скачать или смотреть Trisomy 18 & Trisomy 13: What Shared Decision-Making Really Means | Dr. Alaina Pyle

Families facing Trisomy 18 or Trisomy 13 often encounter complex medical decisions, and shared decision-making has become an essential part of compassionate neonatal care. In this thoughtful discussion, Dr. Alaina Pyle, neonatologist and bioethicist at Connecticut Children’s Hospital, explains what shared decision-making really looks like in practice — and why it requires trust, communication, and partnership between families and their medical teams.

Dr. Pyle emphasizes that these decisions cannot be made by parents alone or by physicians alone. Instead, they are the result of a collaborative process — one where clinicians help families understand their child’s medical needs, options, and uncertainties, while also listening deeply to each family’s values, hopes, and concerns.

This clip highlights:

What shared decision-making means for Trisomy 18 and Trisomy 13 care

Why every family’s information needs are different

The communication challenges neonatologists face in the NICU

How clinicians balance empathy, data, and ethics when guiding families

Why supporting one another as a group leads to better decisions

💙 Watch the full SOFT interview with Dr. Pyle and Dr. John Carey:
https://trisomy.org/aap-report-trisom...

🔗 Learn more about SOFT (Support Organization for Trisomy):
Website → https://trisomy.org

Official AAP Guidance Press Release → https://trisomy.org/aap-issues-histor...

Donate → https://trisomy.org/donations/general...

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