BLOGS
March is Trisomy Awareness Month
It's March and in SOFT's world that means Trisomy Awareness Month! Every March our SOFT community celebrates Trisomy Awareness Month. This is a time when we share awareness and education of Trisomy conditions, celebrate our children who are beating the odds and...
Video – Cardiac Surgery in Infants with Trisomy 18 and Trisomy 13
A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child's diagnosis. Dr. James Hammel at Children's Hospital in Omaha is looking beyond the label, giving our families hope...
SOFT Conference History
SOFT has held annual family and medical conferences in various cities since 1987. The annual conference is organized by a host chapter and conference topics have included an overview of Trisomy 18 and Trisomy 13, medical issues affecting children with trisomy,...
Workshop: Transition Points in the Trisomy Journey
Transition Points in the Trisomy Journey was a morning workshop led by Joyce Coleman, a Licensed Clinical Social Worker with over 20 years of experience in health care.
Perspectives on the Medical and Genetic Aspects of the Trisomy 18 & 13 Syndromes
Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information. The result was he completed about 10% of...
DNRs and Advance Planning for Kids: Everything You Need to Know
In this article, we will go through all the various acronyms, explaining the pros and cons of each type of advance planning order or form, including how each will be interpreted in a variety of settings.
Growth Charts & Surgeries
Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and 13. Children’s standardized growth charts are separate for boys and...
The Rare Disease Connection: Interview with Dr. John Carey & Hope for Trisomy
English Language Podcast Spanish language Podcast
The Care Book (English, Spanish, Portuguese)
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...
April S – Trisomy 18
April's Story "We love her already and will not stop trying to find someone, some facility, who will believe with us!!!" April S, Trisomy 18 and CDH, 02/25/2019, Live 7 weeks, Orrtanna, PA So yay!! We were so excited!!! We're pregnant with baby 11!!!! Going in for an...
