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).
Video: Routine Health Care for Children with Trisomy 18
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? Dr. John Carey, MD and medical advisor for SOFT discusses current medical...
Trisomy 13 – A Handbook for Families
When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is...
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
