RESOURCES
Parenting Resources
Trisomy 18 – A Handbook for Families
When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is,...
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...
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...
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...
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...
Lives Worth Living
Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload
What Shall We Do Now?
For parents of infants newly diagnosed with Trisomy 18 or 13 The Need for Information at Diagnosis For parents facing decision-making following a prenatal diagnosis or diagnosis following the birth...
TRIS Project – Trisomy 18
Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are...
