Companioning at a Time of Perinatal Loss: A Guide for Nurses, Physicians, Social Workers, Chaplains and Other Bedside Caregivers

by Jane Heustis, RN, Marcia Meyer Jenkins RN, Alan D Wolfelt PhD

Overview

Intended for nurses, doctors, midwives, social workers, chaplains, and hospital support staff, this guide gives caring and practical advice for helping families grieve properly after losing a child at birth. As the special needs of families experiencing perinatal loss are intense and require more than just the bereavement standards in most hospitals, this handbook offers tips and suggestions for opening up communication between caregivers and families, creating a compassionate bedside environment, and helping with mourning rituals. Encouraging continual grief support, these specific companioning strategies can help ease the pain of this most sensitive situation.

Product Details

ISBN-13:	9781879651470
Publisher:	Companion Press
Publication date:	05/01/2004
Pages:	144
Sales rank:	641,863
Product dimensions:	5.25(w) x 8.25(h) x 0.40(d)

About the Author

Jane Heustis, RN, is the Pathways Perinatal Loss Support Coordinator at Methodist Hospital and the parish nurse at Irvington United Methodist Church in Indianapolis, Indiana. She lives in Indianapolis, Indiana. Marcia Meyer Jenkins, RN, is a childbirth educator and perinatal bereavement coordinator at St. Francis Hospital and parish nurse at Russellville Community Church in Russellville, Indiana. She lives in Indianapolis, Indiana. Alan D. Wolfelt, PhD, serves as the director of the Center for Loss and Life Transition. He writes the "Children and Grief column for Bereavement Magazine and has appeared on The Oprah Winfrey Show, Larry King Live, and Today. He is the author of Healing a Teen's Grieving Heart, Healing Your Grieving Heart, and Understanding Your Grief. He lives in Fort Collins, Colorado.

Read an Excerpt

Companioning at a Time of Perinatal Loss

A Guide for Nurses, Physicians, Social Workers, Chaplains and Other Bedside Caregivers

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By Jane Heustis, Marcia Jenkins

Center for Loss and Life Transition

Copyright © 2005 Jane Heustis and Marcia Jenkins
All rights reserved.
ISBN: 978-1-879651-47-0

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CHAPTER 1

FAMILIES: BECOMING PART of THEIR STORY

John and Mindy experienced the stillbirth of their first baby at 40 weeks gestation. This is their story, told at a support meeting months later.

They arrived at the hospital early on Monday morning. Contracting since the evening before, they showed up in triage — video camera rolling — ready to greet Matthew, their soon-to-be-born son.

Both were so excited they didn't notice the nurse's difficulty finding the fetal heart rate. After a few tries, the nurse announced she was going to get an ultrasound. They weren't even thinking about anything going wrong. The doctor had had trouble a few times in the office because of Mindy's larger size. When the resident doctor, a person they had never met before, spoke the words "I can't find a heartbeat," Mindy said, "Can't find it? Where did it go?" As soon as she said it, she saw a look of horror on John's face. The doctor continued, "I'm sorry, Mrs. Harris, but your baby has died."

Mindy thought: this isn't possible; the baby was moving just this morning. Besides, she had done everything her doctor asked and read every book on pregnancy. She asked for another doctor. When a second doctor verified the diagnosis, she asked for another ultrasound machine. Not until Mindy's own doctor came did she begin to believe. John sat by the bedside dumbfounded, unable to speak. Mindy thought about crying but couldn't. Rather she felt someone had lifted her up and put her someplace else. She knew she was in the bed and she saw people talking but couldn't hear what they were saying. John experienced the opposite: it was as if the walls of the cubicle closed in, trapping him, forcing him to hear every word. Thoughts of losing his wife as well as his son raced through this mind.

Mindy was quickly moved to a labor room. An IV was started and epidural placed. Staff talked to her about seeing the baby at delivery, but their words were garbled to her. John stood nearby, not sure what to do. When the chaplain suggested he contact family, John mechanically made calls, telling them "there might be something wrong with the baby." He couldn't make the "real words come out."

Matthew was born about 12 hours later. They decided to wait to hold him. Mindy said she was too exhausted from the delivery and John agreed. Looking back, they realize they both were too afraid — afraid of what he would look like, afraid of what his lifeless body would feel like, and, most of all, afraid the pain would be too overwhelming. It was their nurse who helped them overcome their fears. She called Matthew by name and referred to him as their son. She also gave them a Polaroid picture taken after he was dressed. Mindy said, "He looked so sweet in that picture, my heart just melted."

John and Mindy took turns holding him. John would close his eyes and pretend Matthew was still alive. He even read him a book he brought to the hospital called Love You Forever. Staff came in and out of the room, providing care and comfort, but neither John nor Mindy remember much about that. They just remember Matthew.

Matthew's little body appeared perfect and there was no apparent cause for the stillbirth in the cord or placenta. When they asked about the peeling of his skin, they were told he had probably been "dead inside for one or two days." Despite her fogginess, Mindy heard that comment. "He died on Saturday evening or Sunday morning?" she asked. Mindy immediately reviewed everything that happened in the two days prior to delivery, wondering what she had done wrong. She was afraid to ask questions, especially with John in the room. She thought he would blame her for the death of their baby. Not until months later did she realize that John was going through the same process, blaming himself.

Their doctor told them he didn't know why their baby died and suggested an autopsy. "What will they do?" John asked. The doctor explained they would examine Matthew's body, looking for birth defects or complications. "How will they do that?" Mindy asked. The doctor explained it would be like a surgery. "They will cut on his body?" Mindy interjected. Mindy decided that no one was going to cut on her baby. He had been hurt enough. Despite further encouragement from the doctor, no autopsy was done.

Matthew stayed in their room until Mindy was ready to go home. "It was so hard to leave him behind," they both said. "I felt so empty, so hollow. When we were at the hospital, I felt Matthew was still a part of me. Once we left, without Matthew and without all the people who went through it with us, I felt I had nothing left. I wasn't the same person anymore."

Mindy remembers the shock wearing off about a week later. She woke up one day and "it hit her like a ton of bricks." She couldn't stop thinking about how it happened. Did she do something on Saturday night? Was there something that she should have noticed, some sign that should have alerted her to possible trouble? Could she have prevented his death? She searched the internet and joined chat rooms. She checked out every book in the public library on stillbirth. At her postpartum checkup, John and Mindy asked her obstetrician, who could only say that "for most stillborn babies, we never know why." They both felt that not knowing why was almost as painful as the death itself.

When asked if there was anything that the hospital staff did that was helpful (or not helpful), they both said: "Everyone was so wonderful. There was this one nurse. We couldn't have made it without her. She talked to Matthew and sang to him as she gave him a bath. Gosh, we probably would have never even seen him without her. The thought of that scares us — not ever seeing him. We owe her everything."

In perinatal loss, families experience a lifetime of change before they ever reach the hospital. In a matter of seconds, the life they dreamed of and hoped for is gone. No one would argue the intensity of their pain, but do we truly understand it? We have a mental picture of what families go through and an expectation of how they should react, but is it accurate?

To companion families, we must see loss from their point of view. As caregivers, we cannot step inside their shoes and feel what they are feeling, but we can become curious, enter into their story and honor their need to grieve as they choose.

When there is no baby to parent

All parents create a mental vision of their unborn child: He will be a baseball player or she will be a dancer. He will be an honors student or she the first woman president. He will look like his daddy; she will have red hair. Once the baby is born, each parent must let go of the wished-for child and bond with the here-and-now child. Their baby may not look or act the way they thought, but they love him or her just the same. The transition happens quickly and seamlessly; most parents aren't even aware that they are letting go of one while they are embracing another. From the first second their baby is put in their arms, a new and wonderful relationship begins.

When a baby dies, there is no baby to continue the relationship. Like a road that abruptly ends, there is nowhere else to go. It is said that when a loved one dies, the people left behind are suspended between the past that they long for and a future they were only hoping for. For them, life comes to a standstill, for nothing forward makes any sense or meaning. As one mother put it, "It's like sitting in a waiting room for eternity, waiting for what you expect, but nothing ever comes." For John and Mindy, the news that their baby died caused a total standstill. The rest of the world appeared to speed by yet they weren't sure where to travel next. They were stuck in the chasm of loss; they couldn't go forward as planned but certainly could not go back to their pre-delivery state. For families like John and Mindy, the present world feels empty and the past is only shattered hopes and fading memories. Perinatal grief is about the loss of hopes and dreams and the actual death of a baby. Parents grieve over the loss of both.

In a single moment, life as they knew it ends. They experience emotions they have never felt before, ones that have no names in their current vocabulary. When John heard the news about his unborn son, he stood helplessly by, unable to move, make plans or calls. The word "bereaved" literally means "to be torn apart." Each parent has his or her own reaction to bad news, but all feel torn apart from the experience they expected, the one that included a new baby to tend and love. John and Mindy came to the hospital expecting a healthy baby and a new family. They got neither. Hearing the words "there is no heartbeat" tore them away from everything that was familiar, predictable and safe.

Each family bonds with their unborn and begins a relationship that is seeded in love. When the baby dies, the intensity of that love causes feelings of emptiness and loss. There is no doubt that perinatal loss families love their babies, but there are times when fear can temporarily override those feelings. John and Mindy were initially afraid to experience their dead baby after delivery. Some of their fear probably stemmed from society's general discomfort with death, but much was caused by being forced to enter a new and foreign world — the world of grief. Fear can be temporarily more powerful than love and can paralyze families at first. They need someone to help the fear fall away so they can love their baby at this crucial moment. John and Mindy were fortunate to have such a person caring for them after delivery.

The unique and personal side to grief

Like a fingerprint, grief is a one-of-a-kind experience, unique to each person. Each member of the family experiences the same loss but may focus on different elements and/or outwardly express it in his or her own way. John and Mindy appeared to be traveling down the same path after the loss of their first baby, yet John withdrew when in pain while Mindy questioned. Ordinarily, John was the decision-maker in the family, but during crisis, he was unable to fulfill that task. (John told the support group later that he wasn't sure why and was disappointed in himself about that.)

Family members — mother, father, siblings, grandparents and friends — each create a mental image of their relationship with the baby-to-be; that vision will shape their unique response to the loss. Cindy and Dan, another couple who delivered a non-viable baby, had different reactions from the very beginning. Cindy was more focused on her inability to carry a child to term (this was her second loss), while Dan was more preoccupied with the fact that this baby was their first male child. (It was a rite of passage in Dan's family to hand down the family name to the firstborn male.) Cindy cocooned after the delivery, talking about future pregnancies rather than spending time with her son; she needed to address this important piece before she could approach her feelings about her baby. Dan and Cindy also had a five-year old daughter named Hannah. When she came to the hospital to visit, she avoided the baby, clinging to her grandmother or playing with the bed controls instead. Hannah seemed more focused on the emotional changes of her family than her deceased sibling. For Hannah, the fact that her mommy and daddy had changed caused a loss for her.

Parents experience other losses along with the death of their baby. They must face the loss of their status as parents, something that is highly valued in most cultures. Without a child in their home, they will not be seen as parents. The mother may have a caesarean scar to prove her motherhood, but if the crib is empty, she is not a "mother." Significant relationships are affected, too. Many parents report changes in their feelings about their partner because of the loss. Some say the shared loss made the relationship stronger, but some report the opposite. Jillian, a mother who lost her baby at 20 weeks, told the chaplain at a memorial service, "We were engaged to be married but then the baby died and we realized that all we had together was grief and that wasn't enough. I felt like he was always bringing me down. I had to get away." Parents also report changes with friendships, especially those who have children or have never have experienced a loss. "They just don't get it," one mother said at support group. "They think they are better than me." Previous relationships and friendships fail, making the emptiness and isolation even more prominent and hurtful.

Parents can teach us about grief

When we open our minds and hearts, parents can teach us about grief and its effects. The following are some of their messages:

Grief is personal. Mindy and John demonstrated classic signs of crisis: shock, disorientation, denial, and confusion. Not all families grieve that typical way. Parents may display uncontrollable emotions or they may be stoic and distant. They may be distracted or act as if nothing has happened. Trisha, a young mother who delivered a baby with unknown birth defects, played cards and joked with friends just hours after her baby died. When the social worker asked how she was doing, she replied, "I have had bad things happen to me all my life, what's one more? Do I wish she was still alive? Heck yes, but what does that have to do with anything?" Atypical grief responses don't mean they didn't love their baby.

PERINATAL LOSS: WHAT DO FAMILIES GRIEVE FOR?

• A baby, the one they planned for

• Changes in the predicted family make-up, one less member of their family

• An opportunity to be a parent

• Change in relationships between partners: Each parent will grieve differently

• Opportunities for future pregnancies and children

• Level of self-esteem: "I'm not the person I thought I was"

• Status in social circles: Do they "belong" among friends who have children?

• Financial worries: Grief temporarily impedes ability to work

• Physical changes: "I don't feel like the person I used to be"

• Feelings about the future in general

• Sense of security and control in life

• Hopes and dreams: For this pregnancy and for life in general

Not all grief follows a textbook. Family members cope in ways that are right for them at the time.

Grief is not in proportion to the size of the person. John and Mindy's baby was 8 pounds and 15 ounces, a good size for a full-term baby, but in the total scheme of life, Matthew was not a proportional member of society. He was a tiny baby who never made it home from the hospital, never took his first steps, went on a first date or attended college. He was big enough to wear newborn clothes but not "important enough" to warrant an official birth certificate or social security number. His mom and dad had prepared nine whole months for his coming — a lifetime to them. Even families that deliver a very early baby have similar feelings. Tessa and Emilio had been trying to have a baby for over eight years; when they delivered their twins at 17 weeks gestation, they grieved and mourned over their tiny 8 ounce bodies as if they were grown children. To them, they were; after all, they have been hoping for and dreaming of the twins for almost a decade.

The numbing of crisis is powerful. The shock of their initial experience impairs the families' ability to think, express themselves and make decisions. They report being in a fog or feeling fuzzy. Time seems distorted and things move in a slow, freefall manner, waiting for the mind to catch up. Their hearing is tin-like and it is difficult to process the words. Mindy reported she knew people were talking but couldn't "hear" them. Everything feels urgent but nothing gets completed. This period of numbness is the body's way of isolating itself from the stress of the experience. It is like a failsafe or a surge protector, shutting the system down when the energy level gets too high. The person is protected from the intense and raw pain of loss but at a price: they cannot receive or give information. They may not be able to explain what is important in their need for support. Months after delivery, a mother told her midwife that she was surprised at how she handled the death of her baby. "I'm usually so assertive," she said. "I ask for what I need. But I just lay there and let everyone make decisions for me. It was like my mouth didn't work."

Pain is part of the experience. Parents teach us about the pain — the horrible, soul-eating pain that follows the death of a baby. The pain is more than emotional; it is also physical and spiritual. Some is relieved by the support of those around them, but most lingers. Kindhearted, well-meaning caregivers try to take away the pain, but their efforts are often superficial. Kerry remembers the nurse who tried to divert her attention by talking about an actor on TV; she remembers thinking, "Who cares? My baby died and I don't care about things like that anymore." Donisha, whose physician ordered morphine IV push just prior to delivery in response to her intense screaming, has only vague memories of the delivery, baby's bath and baptism. "They stole it all away," she said. "The only time I had and they stole it all away." Donisha's caregivers were only trying to help to ease her pain; they didn't realize that they were adding to her misery. Paternalism — making decisions on the parents' behalf — seems the only recourse when families cannot express their wishes. Still, the pain is there and doesn't go away. It is hard for us to understand that pain must be part of the experience, for it is the pain of love. If they loved their baby, then they will hurt when he or she dies.

(Continues...)

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Excerpted from Companioning at a Time of Perinatal Loss by Jane Heustis, Marcia Jenkins. Copyright © 2005 Jane Heustis and Marcia Jenkins. Excerpted by permission of Center for Loss and Life Transition.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

Title Page,
Copyright Page,
Dedication,
FOREWORD,
PREFACE,
INTRODUCTION,
CHAPTER ONE - FAMILIES: BECOMING PART of THEIR STORY,
CHAPTER TWO - CAREGIVERS: ENTERING INTO the WILDERNESS,
CHAPTER THREE - ENVIRONMENT: CREATING a SPACE for MOURNING,
CHAPTER FOUR - COMMUNICATION: BEGINNING the CONVERSATION,
CHAPTER FIVE - STRATEGIES: PRACTICING the ART of CARING,
CHAPTER SIX - MEMORIES: MAKING the MOMENT LAST a LIFETIME,
CHAPTER SEVEN - DISCHARGE: PREPARING for the WORK of MOURNING,
CHAPTER EIGHT - OTHER PREGNANCY LOSSES: SUPPORT WHEN THERE IS "NO BABY",
CHAPTER NINE - AFTER DISCHARGE: CONTINUING COMPANIONING,
CHAPTER TEN - FINAL THOUGHTS: FINDING JOY,