Republished with permission. Infants with the genetic disorders trisomy 13 or 18 are more likely to survive if they undergo heart surgery, a study from researchers at Stanford and the University of Arkansas has found. Heart surgery significantly decreases in-hospital mortality among infants with either of two genetic disorders that cause severe physical and intellectual…

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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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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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Trisomy 18

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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