RESOURCES
Trisomy 18
Look through various resources and information about Trisomy 18
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 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...
Lives Worth Living
Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload
Diana Victoria Rodriguez
Diana Victoria’s Story “These babies are very special, and we are very special for having them.” Diana Victoria Rodriguez, 07/21/2007 to 08/07/2007, Trisomy 13, Plantation, FL Hello, my name is...
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...
Ethical Rounds: An Infant with T18 & VSD
PROFESSIONAL VIEWPOINT: JOURNAL CLUB Reprinted from the SOFT Times, May/Jun/Jul 2011. Janvier A, Okah F, Farlow B, Lantos JD. 2011. Ethical Rounds: An infant with trisomy 18 and a ventricular...
Managing Grief, Stress and Loss for Special Needs Parents
Workshop Presentation From the 2011 SOFT Conference in Chicago Introduction: My name is Maraline Mattke and I am a Licensed Clinical Social Worker. That means I have a Masters Degree and special...