RESOURCES

Expecting A Child

Are you expecting a child? Read through our resources for helpful information

What Does “Rare” Disorder Mean?

by Jack and Dianna Aubele | May 16, 2012 | Expecting A Child, Medical Professionals, Parenting A Child, Related Disorders, Trisomy 13, Trisomy 18, Trisomy 9 | Journal Club, Related Disorders, Trisomy 13, Trisomy 18, Trisomy 9

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...

Medical Ethics and Decision Making

by SOFT | Mar 19, 2012 | Expecting A Child, Medical Professionals, Parenting A Child, Related Disorders, Resources, Surgery, Trisomy 13, Trisomy 18, Trisomy 9 | C-section, DNR, Ethical decisions, Ethics committee

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...

New Molecular Genetics

by SOFT | Mar 13, 2012 | Medical Professionals, Resources, Trisomy 13, Trisomy 18 | chromosome, genetic testing, karyotype, prenatal testing

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...

The Nature of Hope

by SOFT | Mar 11, 2012 | Beyond Goodbye, Blog, Expecting A Child, Medical Professionals, Parenting A Child, Trisomy 13, Trisomy 18, Trisomy 9 | dignity, Hope, Palliative care

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...

Developmental Pediatrics and the Medical Home

by SOFT | Mar 3, 2012 | Expecting A Child, Medical Professionals, Parenting A Child, Related Disorders, Resources, Trisomy 13, Trisomy 18, Trisomy 9 | children with special health care needs, developmental pediatrics, medical home, therapy

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....

Trisomy 18, Trisomy 13 and Related Disorder Syndromes

by SOFT | Mar 3, 2012 | Medical Professionals, Related Disorders, Resources, Trisomy 13, Trisomy 18, Trisomy 9 | anomalies, chromosomes, karyotype, mosaic trisom 18, mosaic trisomy 13, partial trisomy 13, Partial Trisomy 18, Related Disorders, Trisomy 13, Trisomy 18

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,...

One Family’s Birth Plan

by Jack and Dianna Aubele | Aug 15, 2011 | Expecting A Child, Related Disorders, Resources, Trisomy 13, Trisomy 18, Trisomy 9 | Birth, Birth Plan, birth plan page, Expecting a Child, genetic counceling, hospice, Palliative care, prenatal diagnosis, prenatal screening, Related Disorders, Trisomy 13, Trisomy 18, Trisomy 9

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...

Changes in Prevalence and Outcomes in Children with Trisomy 18 & 13

by Jack and Dianna Aubele | Apr 7, 2011 | Expecting A Child, Medical Professionals, Trisomy 13, Trisomy 18 | Birth, Prevalence

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...

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