Common Problems of Babies with Trisomy 18 or 13

Trisomy 18 Facts

Trisomy 13 Facts

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Trisomy 18

A Handbook for Families
Explains chromosomes, diagnosis, characteristics of Edwards' syndrome and addresses parent questions.
by Stenson et al 1993, (copyright 2005)
Cost: $10.95

Trisomy 13

A Handbook for Families
Explains chromosomes, diagnosis, characteristics of Patau's syndrome and addresses parent questions.
by Stenson et al 1992 (copyright 1999)
Cost: $10.95

Care of the Infant and Child with Trisomy 18 or Trisomy 13.  2008 Edition

The 100 pages of this book give insight into the complex issues of care and living that a parent must cope with as a caretaker of an infant or child with trisomy 18 or 13.  Discussed are common problems, growth charts, surgery tables, developmental milestones, mortality, and more.  Included are recommendations for health supervision and anticipatory guidance by John C. Carey, MD, which contain important guidelines for professionals.   The photos speak volumes about these special children.

By Ann M. Barnes, R.N. and John C. Carey, M.D. 2008
Cost: $14.95

Softly Written, Softly Spoken
The poetry book compiled by our own John Carey!
Cost: $6.00

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

The Support Organization For Trisomy 18, 13, and Related Disorders brochure is an introduction to SOFT that is especially beneficial to new parents.

A Prenatal Diagnosis brochure will soon be available.

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Useful Links

Living with Trisomy 13
A support website for families of children with Trisomy 13.
www.livingwithtrisomy13.org

My Forever Child
Keepsake items to memorialize your child
http://www.myforeverchild.com

Noah's Never Ending Rainbow
The mission of Noah's Never Ending Rainbow, a 501(c)(3) non-profit organization, is to educate, advocate, raise public awareness, promote strategic alliances and assistance families who have children with Trisomy and related chromosome disorders.
www.noahsneverendingrainbow.org

Now I Lay Me Down To Sleep
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 6,000 volunteer photographers in the United States and twenty-five international countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. Our entire network of affiliated photographers graciously donate their time and talents to our families and we are proud to be able to offer our services at no cost.
Video of Trisomy Children
www.nilmdts.org

Share Pregnancy and Infant Loss Support
Our mission is to server those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life. http://www.nationalshare.org/index.html

SHS Nutrition
This site has been designed by you for you to help you understand more about Advanced Medical Nutrition and its related conditions. As a Healthcare Professional, Patient, Parent or Carer you can use this site to search through our extensive range of articles, references, clinical studies and product information on Advanced Medical Nutritional Therapies.
http://www.shs-nutrition.com/conditions/

Tracking Rare Incidence Syndrome (TRIS) -
The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families.
http://web.coehs.siu.edu/Grants/TRIS/