Video – Heartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18

Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal Intensive Care Unit at Children’s Hospital and Medical Center Omaha.Children’s NICU is unique…

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Palliative and Hospice Care

A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care  Palliative Care is often recommended for newborns with trisomy 18 or 13 who are able to be discharged from the hospital to home. Palliative care focuses on patient comfort but also allows interventions such as therapies, treatments and…

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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 remember that underneath the joyous times is bereavement, loss,…

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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 completely changed forever.  The emotions you experience are unexplainable – even to your partner who is going…

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