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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A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care  Palliative Care is often recommended for newborns with trisomy 18 or 13 who are able to be discharged from the hospital to home. Palliative care focuses on patient comfort but also allows interventions such as therapies, treatments and…

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PROFESSIONAL VIEWPOINT:  Journal Club All of us at SOFT and the trisomy 18 community worldwide were saddened by the news of the two hospitalizations of Bella Santorum, daughter of Republican Presidential candidate, Rick Santorum, that appeared in various media sources in 2012.  Most of these stories mentioned or made reference to trisomy 18.  One of…

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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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Healing Your Spirit Workshop Presentation From the 2011 SOFT Conference in Chicago Presenter:  Ms Diane Robinson Notes by: Gerri Meggett This workshop provided a new perspective on God and His plan for us. It shed some light on where God is when you can’t seem to find Him. The presenter, Ms. Diane Robinson, is a…

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Workshop Presentation from the 2011 SOFT Conference in Chicago Presenter:  Valerie Lentz, LCSW Workshop notes by Gerri Meggett Families that have children with special needs get to celebrate wonderful victories while also handling unique challenges and stressors. With all of the time and energy that goes into caring for your special needs child, it may…

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The Nature of Hope: A Live Interview with the Family of Little Erin Workshop Presentation From the 2010 SOFT Conference in Sioux Falls Presenter: Dr. Lawrence Fenton, M.D Dr. Fenton emphasized that each patient is ill in his or her own way. Physicians and others must remember that underneath the joyous times is bereavement, loss,…

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From the 2011 Chicago SOFT Conference This workshop, presented by Larry W. Desch, MD, FAAP Advocate: Hope Children’s Hospital focuses on the need for special needs children to have a Medical Home. Children with Special Health Care Needs There are children with special health care needs, who are at an increased risk for or who…

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