Trisomy 18 in the NICU: When Advocacy Becomes “Medical School”

In this powerful clip from Talking Trisomy, Meri reflects on the first four weeks of her daughter Rose’s life after a Trisomy 18 (Edwards syndrome) diagnosis.

By the time Rose was four weeks old, it became clear that Meri and the medical team were not aligned. Decisions around CPAP, respiratory support, and care planning forced Meri to move from being “just mom” to becoming an active participant in medical decision-making.

She describes those weeks as her “medical school” — and her husband’s “law school” — a crash course in understanding NICU care, respiratory support, and how to advocate for a child with Trisomy 18.

This snippet speaks directly to:

* Parents navigating Trisomy 18 in the NICU
* Families facing decisions about CPAP or respiratory support
* Those learning how to advocate within hospital systems
* Anyone seeking Trisomy 18 support and informed care guidance

Meri’s story highlights an important reality: advocacy is not about conflict — it’s about informed participation in your child’s care.

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WATCH THE FULL EPISODE

🎥 Full conversation here:
https://youtu.be/_BdlSH7-jOo?si=X0kE_jimxzsCVTMa

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RESOURCES FOR EXPECTANT & NEWLY DIAGNOSED FAMILIES

If you’ve received a Trisomy 18 diagnosis, evidence-informed resources can help guide early conversations with your medical team:

📘 Trisomy 18 New & Expectant Parent Book:
https://trisomy.org/expectant-parent

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ABOUT TALKING TRISOMY

Talking Trisomy is a podcast by Support Organization for Trisomy (SOFT), dedicated to supporting families and changing the narrative around Trisomy 13, Trisomy 18, and related rare chromosome conditions.

Видео Trisomy 18 in the NICU: When Advocacy Becomes “Medical School” канала SOFT Trisomy Support