SOFT Stories

SOFT Stories: Stories about or by SOFT families having a child with a trisomy disorder.

These stories come mostly from families having a child with a trisomy disorder.  The first, “Hope for Lilliana” is new and very interesting.    “Reflections – December 1988” is by a Pediatric Critical Care unit physician who took care of a ten year old girl with a trisomy 18 disorder, and learned from the experience.

Hope for Lilliana – see this TV station video presentation about Lilliana’s surgery, challenges and her successes.

Hospital Futility Policies – a brief but informative article from Mary Kellett about recent legislation in Minnesota regarding the need to make Hospital Futility Policies available to parents.   See also an article on hospital Medical Ethics Panels, in Conferences>Presentations (Sioux Falls, 2010).

Birthing Plan, Trisomy 18
by Patricia Lawson

Gifts of the Heart
by Kris Holladay

Growing Up in SOFT
by Patrick Healey

The Blind Men
by Pam Healey

Reflections – December 1988 – KIDSAVERS
by David H. Beyda, M.D.
Director of Pediatric Critical Care
Phoenix Children’s Hospital (Phoenix, AZ)

Reflections – February 2010 – Rejoice in the Journey
by Pam Healey

Be sure to visit the “Family Stories” page!   There you will find many stories written by SOFT parents about their children.   You can also find a photo gallery about our children.   Many of these photos were taken at the annual SOFT Conferences.   Click to Jump to Family Stories.