Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal Intensive Care Unit at Children’s Hospital and Medical Center Omaha.Children’s NICU is unique…

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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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PROFESSIONAL VIEWPOINT:  JOURNAL CLUB Reprinted from the SOFT Times, May/Jun/Jul 2011. Janvier A, Okah F, Farlow B, Lantos JD.  2011.  Ethical Rounds:  An infant with trisomy 18 and a ventricular septal defect.  Pediatrics 127:754-759. When I received my personal copy of the April issue of Pediatrics, my eyes immediately went to the Special Article on…

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Presentation From the 2010 SOFT Conference in Sioux Falls Presenters: Terry Peterson-Henry, D. O. Pediatric Palliative Care and Ellie Schellinger, MA. Medical Ethicist Medicine, although it is grounded in the scientific method and dependent on changing technologies is, nevertheless, also both personal and intimate. Ethics is the discipline that systematically analyzes and rationally justifies the…

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PROFESSIONAL VIEWPOINT:  Journal Club KANEKO Y, KOBAYASHI J, IKUYA I, ET AL. 2009. CARDIAC SURGERY IN PATIENTS WITH TRISOMY 18. PEDIATR CARDIOL 30:729-734. This work, accomplished by a group at the Japanese Red Cross Medical Center in Tokyo, Japan led by the first author (a cardiovascular surgeon), summarizes the outcomes of cardiac surgery in 17 infants with…

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Trisomy 18, 13, & Related Disorders A Research Newsletter For Health Professionals Issue Number 1, Spring, 1993 (note: the guidance table below was updated in 2005) The following pages are from Trisomy in Review, Trisomy 18, 13, and Related Disorders, a Research Newsletter published in the spring of 1993. We hope they can provide helpful…

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