ChiPPS Pediatric Palliative Care Newsletter -- Issue #7; May, 2007

Edited by Charles A. Corr, Ph.D., CT, and Christy Torkildson, RN, PHN, MSN

Issue Topic: Perinatal Loss
Download this Issue's collection of articles (PDF)


by Charles Corr and Christy Torkildson 

Welcome to the seventh issue of our ChiPPS electronic newsletter! This newsletter is a project of the Education Work Group of ChiPPS, the Children’s Project on Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care Organization.

We want to thank you, our readers, for supporting the ChiPPS PPC newsletter and we hope that you are finding it useful. We are grateful to everyone who has taken the time to offer feedback, support, and suggestions regarding this newsletter. Your input is very helpful to us. One of our primary goals is that you, the reader, will offer ideas and suggestions regarding themes and content of this newsletter—both current and future. What ideas and suggestions do you have for us to work on?

Please contact us via e-mail. You can reach Christy at ctorkildson@georgemark.org and Chuck at charlescorr@mindspring.com.

Before we get to the overall theme of this issue of the newsletter, perinatal loss, we want to share a few items of interest.

1. Call for Resources of Interest. Issue #7 of our e-newsletter continues our exploration of perinatal loss; issue #8 will focus on issues relating to neonatal loss.  If you have a resource suggestion that might be valuable to share, please email Karen Paradise Baranowski to let her know, Karen.baranowski@intermountainmail.org.  It could be a Web site, upcoming conference, publication, article or other material.

2.  Leadership of the ChiPPS Education Work Group. In April of 2007, Mary Kay Tyler, RN, MSN, CNP, the Director of Pediatrics and Clinical Support Teams at the Hospice of the Western Reserve in Cleveland, Ohio, agreed to become the Co-Chairperson of the ChiPPS Education Work.  Mary Kay will share that leadership role with Christy Torkildson, RN, PHN, MSN, of George Mark House in San Leandro, California, who continues at Co-Chairperson. Mary Kay can be contacted at MKtyler@hospicewr.org; Christy’s e-mail address is ctorkildson@georgemark.org.  Chuck Corr will continue as a member of the Education Work Group and as a co-editor for the newsletter.

3. Suggestions for Future Issues of This Newsletter. We would welcome suggestions of topics, contributors, and specific contributions for future issues of this newsletter. Please send any suggestions to Mary Kay Tyler or Christy Torkildson at the e-mail addresses noted above.

4.  New Pediatric Brochures. NHPCO's Caring Connections has four new educational brochures written specifically for parents of seriously ill children.  The brochures, available in both English and Spanish, can be previewed at www.caringinfo.org (under ‘Resources’) or purchased from NHPCO’s Marketplace.  The brochures cover pain, grief and communication issues. More information is available for parents of seriously ill children at www.partnershipforparents.org (Spanish version, www.padrescompadres.org). Both Web sites were created by the Children’s Hospice and Palliative Care Coalition.

5. Calendar of Events.  A reminder to readers that there is a calendar of pediatric educational opportunities available online at the ChiPPS section of the Web site. Should you have an event or conference that might be of interest to our readers, please send an email to Karen Paradise Baranowski who will help us keep track of these offerings. Email Karen at Karen.baranowski@intermountainmail.org.

6.  ChiPPS Online.  A reminder that NHPCO has created an easily accessible Web page with information about pediatric issues, including ChiPPS. Please feel free to share this URL with any of your colleagues or others who may be interested in our work:  www.nhpco.org/pediatrics.

Perinatal Loss

The overall subject of this issue and the previous newsletter, Issue #6 released in February 2007, is perinatal loss. Here is a brief Table of Contents highlighting the articles included in this issue and offering a brief description of each piece.

Download the following collection of articles: Perinatal Loss, Issue #7 (PDF) 

Perinatal Palliative Care: Lighting the Way for Families through a Difficult but Sacred Journey of Beginnings and Endings
Liz Sumner, RN

This article looks at the history of perinatal palliative care with the view of palliative care as a “lifespan” issue not an age issue. The article offers practical suggestions for implementing strategies to support for families facing perinatal/neonatal loss.

Current and Emerging Issues in Perinatal Loss and Birth Planning for Parents facing Difficult Circumstances
Ann Fitzsimons, BS, MBA, and Beth Seyda, BS

This is the second part of a series highlighting key insights from the 15th National Perinatal Bereavement Conference held in Chicago in 10/06 by PLIDA, the Pregnancy Loss and Infant Death Alliance. Two presentations are summarized in this brief article. The first deals with some old and new types of unspoken losses suffered by mothers perinatally, at birth, or postnatally. The second focuses on perinatal hospice and the need for birth planning, what they are, and how to help families with a birth plan when a terminal prenatal diagnosis is evident.

The NICU: A Different World
Missy Stamper

Missy shares her moving story of the birth of her son Nathan, a 30-week premature infant, life in the NICU, and lessons learned from her very special son. A true story with lessons for us all.  

Obstacles to Optimal Palliative Care in the Labor and Delivery Unit
Gay Gale, RNC, MS, and Alison Brooks, RN, MS, CNS

This article describes the development of a model Perinatal Palliative Care program at Alta Bates Summit Medical Center in Berkeley, CA, including challenges and a call for action. 

Providing Emotionally Supportive Care to Parents as They Face Decisions after Prenatal Diagnosis of a Baby’s Life-Limiting Condition
 Deborah L. Davis, PhD

Deborah L. Davis, Ph.D., author of Empty Cradle, Broken Heart and Loving and Letting Go, writes eloquently about providing a safe “holding” environment for parents and maintaining therapeutic boundaries.

Frequently Asked Questions: Perinatal Loss
Donna Armstrong, MSW

Educational Resources
Karen Paradise Baranowski, RN

We hope you will enjoy reading these article and will find them to be of value in your work. Thank you for taking time to read this issue and for any feedback that you can offer us.  Providing pediatric palliative and hospice care to children, adolescents, and their family members has made great strides in recent years, even though it is certainly not always easy and still faces many challenges and obstacles.  We wish you all the best in your good work.

If you are not on our mailing list and received this newsletter from a friend or some other source, please send an email message to CHIPPS2@NHPCO.org requesting to be added to our mailing list.

Visit the ChiPPs Web page at www.nhpco.org/pediatrics for further materials and resources of interest.

 

© ChiPPs Newsletter, NHPCO 2007.