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).

Trisomy 18, Trisomy 13 and Related Disorder Syndromes
Workshop Presentation from the 2011 SOFT Conference in Chicago Presenters: Dr. John Carey and Dr. Jeannette Israel This genetic syndrome overview workshop was presented by Dr. Carey and Dr. Israel,...
One Family’s Birth Plan
This birthing plan, for a child with trisomy 18, was prepared by Patricia Lawson, a trisomy parent. Parents: Elliott & Patti LawsonChild: Regan Adeline After our daughter Regan...
Changes in Prevalence and Outcomes in Children with Trisomy 18 & 13
PROFESSIONAL VIEWPOINT: Journal Club IRVING C., RICHMOND S, WREN C, LONGSTER C, AND EMBLETON ND. 2011. CHANGES IN PREVALENCE AND OUTCOME FOR TRISOMIES 13 AND 18: A...
Cardiac Surgery in Patients with Trisomy 18
PROFESSIONAL VIEWPOINT: Journal Club KANEKO Y, KOBAYASHI J, IKUYA I, ET AL. 2009. CARDIAC SURGERY IN PATIENTS WITH TRISOMY 18. PEDIATR CARDIOL 30:729-734. This work, accomplished by...
Trisomy in Review
Trisomy 18, 13, & Related Disorders A Research Newsletter For Health Professionals Issue Number 1, Spring, 1993 (note: the guidance table below was updated in 2005) The following pages are from...
Health Supervision & Anticipatory Guidance for Infants & Children with Trisomy 18 & 13
The Table below is extracted from the SOFT Trisomy in Review Research Newsletter, first published in 1993 and updated in 2005. It is meant to provide a framework and checklist for medical care,...