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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Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and 13. Children’s standardized growth charts are separate for boys and girls. The SOFT charts are a combination of both male and female growth.…

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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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What is Trisomy 13? It is difficult to find the accurate prevalence data about trisomy 13 (t13). Some studies look to hospital registries while others focus on infants born in a specific state or country. Numbers are extrapolated and figures are shared. The common finding is a bleak one with an emphasis on the presence…

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Trisomy 13, Trisomy 18 and related disorders ~ The TRIS Project ~ Tracking Rare Incidence Syndromes The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures…

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