SOFT Publications

~ Other SOFT Publications about trisomy ~

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The SOFT Times Newsletter is published four times per year as a free on-line publication.   Click the link to access the library of current and past copies.

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

Constipation 101 – a video providing a comprehensive explanation of the causes and cures of constipation.   It is found on the trisomytalk.com  website.   Here is a transcript of the discussion, from this video.

 Trisomy 18 Facts – An introduction to Trisomy 18

 Trisomy 13 Facts – An introduction to Trisomy 13

 Trisomy Conditions – A brief explanation of trisomy, partial trisomy, translocations and mosaicism.

 Prenatal Screening and Diagnosis

 What Shall we do Now?  Necessary Information after a Diagnosis of Trisomy

 When in the Hospital

 About Pediatric Palliative Care

 Surgery Information and Growth Charts

  • List of the ~2,000 surgeries which have been performed on our children.  Includes a separate list of Cardiac Surgeries.

  • List of hospitals where cardiac surgery has occurred for our children.

  • The only known growth charts that describe growth for Trisomy 18, and Trisomy 13 children.  Print these and take them to your child’s physician.

  • Height charts for children having full Trisomy 18  or 13.

  • Head circumference charts for children having full Trisomy 18 or 13.

  • Weight charts for children having full Trisomy 18 or 13.

 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.

 Be sure to visit the Professionals section of the web site to see a bibliography of medical articles regarding our children with trisomy conditions.

Other

 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.  You can also click here for a webinar about the book and the Crosier’s experiences

Click on this link: Trisomy 13/18 for Siblings (UK), to see a very nice booklet produced by SOFT of the United Kingdom (SOFT UK) 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.

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