~ SOFT Publications ~

This section of the web site presents a number of publications concerning trisomy and children having a trisomy disorder.

Articles & Information

Common Problems of Babies with Trisomy 18 or 13   An article summarizing the problems children with a trisomy disorder commonly experience.

Trisomy 18 Facts – An introduction to Trisomy 18

Trisomy 13 Facts – An introduction to Trisomy 13

SOFT Surgery Registry  Over 1,500 surgeries experienced by our children have been reported, including many cardiac surgeries.

SOFT Growth Charts   Charts comparing height, weight and head circumference of children with trisomy disorders to typical growth curves.   Print and take to your child’s physician.

Trends in Healthcare - Discusses the changes that have occured over the years, in health care for children with trisomy

Reflections – An article by David H. Beyda, M.D., Director of Pediatric Critical Care, Phoenix Children’s Hospital, concerning what he learned from caring for a child having trisomy 18.

SOFT Books

Visit the SOFT Store to view books available for purchase.   Available books include:

Care of the Infant and Child with Trisomy 18 or Trisomy 13 (2008).   A paperback book containing a great deal of information regarding care of these children.

Care of the Infant and Child with Trisomy 18 or Trisomy 13 (2011).   This is an e-book version of the paperback, which can be downloaded to a PC, and read there, or printed.   It contains updated text and provides new information that is not in the 2008 book.

Softly Written, Softly Spoken.   This is a book of parent poetry, collected by John C. Carey, MD, the SOFT Medical Advisor.

Trisomy 18 – A Handbook for Families.   Discusses the syndrome and questions that new parents might have.

Trisomy 13 – A Handbook for Families.   Similar to the Trisomy 18 handbook, but is for Trisomy 13 parents.

To order books by mail, please download and print the Mail Order Form by clicking here.

Newsletter & Brochure

The SOFT Times Newsletter is mailed to active SOFT USA members four times per year.  The newsletter contains family letters, pictures, helpful suggestions, professional input, SOFT conference information and more.  It is a wonderful source of information and contact for every SOFT member.   A sample copy can be seen by clicking here.

The deadline for submitting articles or information to the May/June/July 2012 Newsletter is April 15, 2012.

The deadline for submissions for the Aug/Sept/Oct, 2012, issue is July 30, 2012.

The Support Organization For Trisomy 18, 13, and Related Disorders brochure (provided only in the new family packet)  is an introduction to SOFT that is especially beneficial to new parents.

Other

A great deal of information about chromosomes, trisomy and other chromosome disorders is available from the U.S. National Institute of Health’s National Library of Medicine.   Also available is an extensive Glossary of Genetic and Medical Terminology.   Click here to access this information.

See also the information available under this website’s “Professional” tab.