Provision of information and links does not constitute SOFT USA’s endorsement of any group. The International Trisomy 18/13 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively).   The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate…

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When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

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When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

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Birth Plan for Hannah Faith, diagnosed with Trisomy 18 On October 7th 2013, I was 14 weeks pregnant and expecting a call from our genetics counselor to reveal the gender of our third child! Her words, instead changed the course of my life. My child had Trisomy 18. I had never heard of it. But…

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Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child.  It has been continually updated as new…

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For parents of infants newly diagnosed with Trisomy 18 or 13 The Need for Information at Diagnosis For parents facing decision-making following a prenatal diagnosis or diagnosis following the birth of a son or daughter with trisomy 18 or trisomy 13, information is essential, if informed decisions are to be made. Parents are being asked…

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Workshop Presentation From the 2011 SOFT Conference in Chicago Introduction: My name is Maraline Mattke and I am a Licensed Clinical Social Worker. That means I have a Masters Degree and special training to help people deal with their individual situations and life challenges. Many times I have been humbled by the magnitude of the…

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