How the Trisomy 18 and Trisomy 13 New and Expectant Parent Books Came to Life

Families who receive a Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome) diagnosis often describe their first days as overwhelming — a moment when information feels contradictory, emotions are raw, and support can feel out of reach. At SOFT, we believe no family should navigate those first steps alone.

This week on the SOFT Podcast, Executive Director Nick Holladay brings together a team of parents, clinicians, and long-time advocates to discuss the creation of one of SOFT’s most important new resources: the Trisomy 18 & Trisomy 13 New and Expectant Parent Books.

Listen on Spotify: https://open.spotify.com/episode/6OUljxVPxAFZFO01urAaqE?si=OaTCrs50TJu1muR8CSoqog
Watch on YouTube: https://youtu.be/gm3KTL0lg-E

These books are designed to help families navigating a diagnosis of Trisomy 18 or Trisomy 13 — and to support clinicians seeking accurate, balanced information to share at the point of diagnosis.

A Collaborative Project Grounded in Compassion & Clinical Insight

This podcast episode brings eight contributors together to reflect on how these books came to life:

Dr. John Carey • Dr. Jacqueline Vidosh • Dr. Jennifer Sogge • Kris Holladay • Barbara Vanherreweghe • Kelly Hernandez • Terra Spiehs-Garst • Nick Holladay

While she was unable to attend the recorded discussion, Terre Krotzer played a significant and foundational role in building the structure, content vision, and editorial direction of the books. Her contributions helped shape the balanced, accessible format that families and medical teams rely on today.

Together, this multidisciplinary group discusses:

The gaps families face when receiving a Trisomy 18 or Trisomy 13 diagnosis
How to create accurate, non-directive, family-centered information
The importance of language that supports autonomy, hope, and shared decision-making
How these books can improve communication between families and medical professionals
Why SOFT continues to build resources that respect the diversity of family experiences

Why These Books Matter

A diagnosis of Edwards syndrome or Patau syndrome touches every part of a family’s life — emotionally, medically, and practically. Many parents described wanting a resource they could revisit on their own timeline, one they could share with obstetricians, neonatologists, genetic counselors, NICU teams, and extended family.

The new SOFT books were designed to be that resource.

They include:

Clear explanations of diagnosis and testing
Balanced discussions of treatment pathways
Information on perinatal and neonatal care
Family stories and lived experience
Guidance on difficult decision-making moments
Resources for bereavement support, peer-to-peer connection, and palliative care
Practical tips for navigating the NICU, home care, and long-term planning

These books reflect SOFT’s guiding commitment: to provide compassionate, evidence-informed support without judgment or pressure.

The Role of Parent and Medical Collaboration

One of the strongest themes in this episode is how important it was to unify medical expertise with parent lived experience. The contributors speak openly about:

Ensuring the books reflect the full range of medical possibilities
Respecting the different values, needs, and goals that families bring
Updating outdated narratives about Trisomy 18 and Trisomy 13
Highlighting that some children live longer than commonly expected
Supporting families through grief, uncertainty, and hope

This collaboration strengthens trust — not only between SOFT and families, but also between families and their care teams.

A Message for Newly Diagnosed Families

If you have just received a Trisomy 18 or Trisomy 13 diagnosis, you are not alone.
SOFT is here to walk with you, at your pace, with information that is accurate, compassionate, and grounded in decades of experience.

📘 Download or request your free copies of the New and Expectant Parent Books:
https://trisomy.org/new-expectant-parent-books

These books are available at no cost, and clinical teams are encouraged to distribute them.

Listen to the Full Conversation

This episode offers a rare, behind-the-scenes look at how a national rare-disease organization builds meaningful, trauma-informed resources for families at diagnosis.

🎧 Spotify: https://open.spotify.com/episode/6OUljxVPxAFZFO01urAaqE?si=OaTCrs50TJu1muR8CSoqog
▶️ YouTube: https://youtu.be/gm3KTL0lg-E

Support SOFT’s Mission

If you believe in expanding compassionate support for families facing Trisomy 18, Trisomy 13, or other rare chromosome conditions, please consider supporting SOFT.

💙 Donate: https://trisomy.org/donations/general-donation-form

Your generosity directly funds the creation of resources, peer-to-peer support, educational materials, and family outreach.

Join Our Community

📱 Facebook: facebook.com/groups/TrisomySOFT
📸 Instagram: instagram.com/trisomy_soft
🌐 SOFT Website: https://trisomy.org

Together, we continue changing the narrative for Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), and — with hope, dignity, and connection.