RESOURCES
Parenting Resources
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. It has been continually updated as new information has become available and is the only known resource of its kind. The updated book is available here in English (click the cover), Spanish and Portuguese (click the links below). Please feel free to reproduce as many copies as desired (but don’t change any of the text).

A Trisomy 18 Journey of Courage, Care, and Joy: The Story of Dane Sogge
When families first hear the diagnosis Trisomy 18, also known as Edwards syndrome, they often face a tidal wave of fear, medical uncertainty, and conflicting information. In this powerful SOFT...
How SOFT Created the Trisomy 18 & Trisomy 13 Expectant Parent Books: A Deep Dive on the SOFT Podcast
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...
AAP Report on Trisomy 18 and 13: How New Guidance Is Changing Care for Families and Clinicians
A Historic Shift in Trisomy Care The AAP Report on Trisomy 18 and 13 represents one of the most significant shifts in neonatal ethics and family care in decades.In this episode of the SOFT Podcast,...
COMING SOON: Room 119 — A Trisomy 13 Story of Love and Courage
Discover Room 119 — Michelle Stewart’s moving true story of baby Adaeze, a three-pound miracle who changed lives through her love and courage.
Living in the Moment with Bree: A Family’s Journey with Trisomy 13
Discover Bree’s story — a powerful short film about a family’s journey with Trisomy 13, shared by Holland Bloorview Kids Rehabilitation Hospital.
Honoring RJ’s Light: The Manley Family’s Tribute Shines Bright
On September 18, 2015, Kahle Giesen and RJ’s father welcomed their son, RJ Manley, into the world. Born with Trisomy 18, RJ lived for two precious days. Though his time was short, his life continues...
SOFT Conference 2025 Highlights | Indianapolis
SOFT Conference 2025 – Highlights from Indianapolis, Indiana We are excited to share the highlight video from the SOFT Conference 2025 in Indianapolis, Indiana! This year marked the 39th SOFT...
SOFTLY SPOKEN (Support Organization for Trisomy 18, 13, and Related Disorders)
SOFTLY SPOKEN: “FULL CIRCLE” By Kris Holladay Eleven years ago, I was on a flight from Phoenix to Salt Lake City. About the time we would be flying over the Grand Canyon, the pilot speaking from...







































