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…

Read More

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,…

Read More

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…

Read More

Workshop Presentation from the 2011 SOFT Conference in Chicago Presenters: Dr. John Carey and Dr. Jeannette Israel This genetic syndrome overview workshop was presented by Dr. Carey and Dr. Israel, with Dr. Carey presenting some quick genetics of chromosomes, then covering the basics of trisomy 18. Dr. Israel focused on trisomy 13, including translocations, and…

Read More

This birthing plan, for a child with trisomy 18, was prepared by Patricia Lawson, a trisomy parent. Parents:  Elliott & Patti LawsonChild:  Regan Adeline After our daughter Regan was diagnosed with Full Trisomy 18 at twenty weeks our lives completely changed forever.  The emotions you experience are unexplainable – even to your partner who is going…

Read More

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…

Read More