BLOGS
Medical Ethics and Decision Making
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...
Healing Your Spirit
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...
Marriage and Your Trisomy Child
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...
We are as Scared as You
Those in the ER are as Scared as Parents Workshop Presentation from the 2010 SOFT Conference in Roanoke Presented by: Dr. Kerry Powell - Emergency Room Physician In introducing his workshop, Dr. Powell wrote, “almost every parent of a disabled child will at some time...
New Molecular Genetics
New Molecular Diagnostic Methods in Genetics Workshop Presentation From the 2010 SOFT Conference in Sioux Falls Presenter: Patricia Crotwell, Ph.D. There have been advances in genetic testing in which small deletions that the microscope through previous methods could...
The Nature of Hope
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...
Developmental Pediatrics and the Medical Home
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...
Trisomy 18, Trisomy 13 and Related Disorder Syndromes
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...
One Family’s Birth Plan
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...
Changes in Prevalence and Outcomes in Children with Trisomy 18 & 13
PROFESSIONAL VIEWPOINT: Journal Club IRVING C., RICHMOND S, WREN C, LONGSTER C, AND EMBLETON ND. 2011. CHANGES IN PREVALENCE AND OUTCOME FOR TRISOMIES 13 AND 18: A POPULATION-BASED STUDY OVER 23 YEARS. JOURNAL OF MATERNAL-FETAL...
