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).
SOFT Member Spotlight – Barbara Llanos
A Journey of Love and Strength: Barbara Llanos and Addesa Vasquez’s Trisomy 18 Story Introduction When Barbara Llanos first heard the words Trisomy 18, her world changed forever. The...
SOFT Member Spotlight – Luz Amalia Veloz Gonzalez
A Mother's Journey of Hope and Resilience: Luz Amalia Veloz Gonzalez and Mia Ariely Juárez Velo Introduction Luz Amalia Veloz Gonzalez's world was turned upside down when she received the...
SOFT Member Spotlight – Lilianna Wiebe
A Parent’s Journey: Lilianna Wiebe and Alyosha Nicodemus Introduction The journey of parenthood is often unpredictable, filled with joys, challenges, and moments of profound reflection. For...
SOFT Member Spotlight – Nicole Whitaker
The Strength of a Mother: A Journey Through Trisomy 13 Introduction Receiving an unexpected medical diagnosis for a child is one of the most life-altering experiences a parent can face. The...
SOFT Member Spotlight – Brittany Diaz
A Journey of Love and Strength: Brittany Diaz and Everlii Raine Joy Introduction Parenthood is a journey of hope, dreams, and unexpected turns. For Brittany Diaz, this journey took a path she...
Charlotte Whitaker – Trisomy 13
Charlotte’s Journey: A Warrior Princess’s Fight Against All Odds Our journey with Charlotte began long before she was born. At 27 weeks, we received the results of a Non-Invasive Prenatal...
2024 SOFT Conference Workshop: Cardiac Surgery In Infants with Trisomy 18 and 13
This workshop was presented at the 2024 SOFT Conference in Minneapolis, MN on July 12, 2024.Please note that the Doctor Q&A is also included on this video.
Perspectives on the Care and Management of Children with Trisomy 13 & 18 Syndromes
Perspectives on the Care and Management of Children with Trisomy 13 & 18 Syndromes. Presentation occured at the Grand Rounds on July 12, 2024 in Saint Paul, Minnesota.