Other Publications

Evy Kristine, A Beautiful Journey by Siri Fuglem Berg MD Phd. Co-founder ITA
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Amazon USA
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Amazon UK
"As a physician I want to share my experience of carrying to term my daughter with trisomy 18. Our journey was beautiful and enriching, in spite of the obstacles we met in the health care system - the pressure to terminate, and the lack of medical care for babies with trisomy 18. I hope the book can be a support for other women carrying to term a baby that did not turn out as expected."
Care of the Infant and Child with Trisomy 13 or Trisomy 18 - SOFT USA (free)
This e-book is the 2014 update to the 2008 edition of 'The Care Book.'  Learn about the complex issues of care and living that caretakers (parents) and these children cope with in their everyday lives.  See photos, parent comments and topics that  include diagnosis, common problems, surgery, milestones, mortality and more.   
The book closes with a table of recommendations for professionals: Health Supervision, and Anticipatory Guidance for Infants and Children with Trisomy 18 and 13 from Dr. John C. Carey, SOFT USA and International Trisomy Alliance Medical Advisor. 
By Ann M. Barnes, RN and John C. Carey, MD, MPH.
Special Delivery  - A grief support book for kids (free)
In the fall of 2008, Melanie Tioleco-Cheng received the news that no expectant mother ever wants to hear. Her baby was diagnosed with trisomy 18. As a physician, she knew exactly what this meant for her second child, Macy, and even more about how little her chance of survival was in light of her heart and lung problems. But how would Melanie explain this to her two year old? How does a parent talk about what to expect in the hospital? How can anyone prepare a child for a baby sibling who will not live very long?

By Melanie Tioleco-Cheng
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