Pam’s Papers

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Pam’s Papers:  Research and Commentary Papers about
Children with Trisomy Disorders

written by SOFT Member Pamela Healey, PhD

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  “Pam’s Papers” constitutes a body of work focussing on children having trisomy disorders, the medical literature about these children and the ethical and cultural landscape surrounding these families.

 

SOFT Lights the Way  The Beavertail Light, near Jamestown, is the symbol of the 2013 SOFT Conference, to be held in Providence, Rhode Island.  In this article, Pam discusses lighthouses and how SOFT provides a beacon for families.

Denver Bioethics Conference.  Pam summarizes a conference held in Denver to discuss aspects of the care given to our children.

What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13    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.   Pam provides the reader with a framework of things to consider as these decisions are being studied.

The Medical Intervention Debate    Increasingly, there are articles in journals, frequently about children having a trisomy disorder, and blogs and conversations on the internet, each related to the need for or wisdom of providing medical intervention to save the lives of infants and children with syndromes characterized by medical fragility and severe developmental delay.   Pam analyzes a recent medical article concerning this debate.

The Culture of SOFT Here, Pam provides an insight into who SOFT members are; how SOFT functions and the philosophy under which it operates.

The Dakota Experience    “In preparation for our vacation in South Dakota, the location of the 2010 SOFT conference, I read a book about the Dakotas that I happened upon at a used book sale. SOFT members have learned there are no coincidences, just gentle nudgings toward what we need to have happen, what we need to know and who needs to enter our lives.”

 

 

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