~ SOFT Publications ~
This section of the web site presents a number of publications concerning trisomy and children having a trisomy disorder.
♥ The SOFT Times Newsletter is published four times per year as a passworded on-line publication, available at no cost to registered members. Click the link to see more information about the Newsletter, to read a sample copy or to access the library of current and past copies. The library is password-protected and available to registered members only (registration is free and your personal and family information is not shared).
♥ Articles & Information:
Common Problems of Babies with Trisomy 18 or 13 An article summarizing the problems children with a trisomy disorder commonly experience. This is a .pdf article and you will need Adobe reader to view it.
SOFT Surgery Registry Over 1,800 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 – A timeless 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.
♥ Medical Literature
Be sure to visit the Professionals section of the web site to see a bibliography of medical articles regarding our children with trisomy conditions.
Visit the bottom of the home page to view books available for purchase on-line using your credit card or PayPal.
You may also open an order form to be mailed to SOFT. To order books by mail, please download and print the Mail Order Form by clicking here. All proceeds from book sales support SOFT, an all-volunteer organization.
Available books include:
Care of the Infant and Child with Trisomy 18 or Trisomy 13, 2008 paperback edition. Often referred to as “the Care Book,” it tells of the complex issues of care and living that caretakers (parents) and these children cope with in their everyday lives. Topics include diagnosis, common problems, surgery, milestones, mortality and more. The book closes with a table of recommendations for health supervision, and anticipatory guidance from Dr. John C. Carey, SOFT Medical Advisor. By Ann M. Barnes, RN and John C. Carey, MD, MPH. $6.00
E-book form of the Care of the Infant and Child with Trisomy 18 or Trisomy 13. Updated in 2011 with new information not in the 2008 paperback. By Ann M. Barnes, RN and John C. Carey, MD, MPH. There is a $6.00 charge for the download, which can be read or printed from your PC or your E-Book reader.
Trisomy 18 – A Handbook for Families (paperback). Explains chromosomes, diagnosis, characteristics of Edwards syndrome and addresses parent questions. By Stenson, et al 2005. $6.00
Trisomy 13 – A Handbook for Families (paperback). Explains chromosomes, diagnosis, characteristics of Patau syndrome, and addresses parent questions. By Stenson, Et al 1992 $6.00
Softly Written, Softly Spoken (paperback). A book of poems relevant to our children. These were written by SOFT families and collected and edited by John C. Carey, MD, MPH $6.00
Book by SOFT parent Sheryl Crosier “I Am Not a Syndrome – My Name is Simon” is now available from publisher All Star Press - Books that Change Lives. It is offered in all online e-book formats and in paperback form from the publisher’s website, http://AllStarPress.com. A portion of the proceeds from every sale of this book will go to SOFT.
Click on this link: Trisomy 13/18 for Siblings (UK), to see a very nice booklet produced by SOFT of the United Kingdom and linked here with their permission. Please respect the copyright of this document and do not further distribute it beyond your personal use.
The SOFT UK web site has a number of excellent publications which can be accessed here: http:/www.soft.org.uk/Support/SOFT-Publications
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.