Perinatal Palliative Care is the combined efforts of the baby's parents and family, physicians, nurses, chaplains, hospice, and others in order to provide compassionate and dignified care during the life of the newborn baby (whether it be weeks, days, hours, or even minutes), to minimize and control pain and suffering, and to provide emotional support to the family before, during, and after the birth and death of the baby.

 

Some of the things that the Northside Hospital Perinatal Loss Office

can provide for you and your family:

~ Telephone and emotional support during the pregnancy and after delivery

~ Information regarding what to expect at the time of labor and delivery

~ Assistance parents in creating an individualized Plan of Care (Birth Plan) to be a guide for caregivers and a "voice" for your family

~ Resources for spiritual and/or religious support

~ Connections with other parents who have been through similar situations

~ Information and referrals as needed for therapists, pastoral care, hospice, and funeral directors

~ Literature, Internet resources, and books pertaining to palliative care, creating memories with your baby, and planning your goodbyes

~ A member of the PNL Office will work with you one-on-one and will be a liaison among all the disciplines involved in the care of the entire family (OB, Neonatalogy. Anesthesia, Nursing, Pastoral Care, Pediatrics, Hospice, Healthy Psychology, etc.

~ Information regarding decisions that parents will face before, during, and after the delivery

~ Assistance with arranging hospice care in your home or at a hospice facility (as applicable)

~ Support Group meetings to help you cope after the death of your baby

~ Provide memorial opportunities such as the annual Atlanta Walk to Remember

 

http://www.hospicefoundation.org/blog/2008/03/perinatal-hospice-programs.html

http://dying.about.com/od/pediatriccare/a/perinatal.htm

Anna, a Daughter’s Life (William Loizeaux) is a journal of memories and remembrances written by the father of a baby girl who died from VATER Syndrome when she was several months old. 

Couple Communication After a Baby Dies (Sherokee Ilse and Tim Nelson) provides insight into the differences and similarities of men and women who grieve.  The book includes the stories of two “imperfect couples” (the Ilse’s and the Nelson’s) who have endured 20+ years since their babies have died.  The book also includes a mini-workbook of conversation starters. Ilse has written over 17 books and booklets on loss and has worked with numerous infant loss organizations.  Nelson is the author of A Father’s Story as well as “A Guide for Father’s When a Baby Dies” and co-founded A Place to Remember publishing company. 

Embracing a Loss from Sorrow to Acceptance (Elisa Carrillo Baldry) is a journal “companionway” that provides tools for working through grief.  It includes the author’s own poems and personal thoughts, but it also gives the reader journaling prompts.  This may be particularly helpful to those who wish to journal but are not sure how to begin.

Empty Cradle, Broken Heart (Deborah L. Davis) is a national best seller that has been providing comfort and reassurance to parents for many years.  There is a new, updated edition available.

An Exact Replica of a Figment of My Imagination (Elizabeth McCracken) is a beautiful addition to our lending library, actually, to any library.  McCracken tells the “the happiest story in the world with the saddest ending.”  She starts by telling the reader, up front, that two babies are born in this book, and one of them dies.  She recounts the story of her pregnancies and her deliveries . . . and reminds us that parents want to remember their children who have died with pleasure.   

Forgotten Tears:  A Grandmother's Journey Through Grief (Nina Bennett) a must-read for anyone who has had a loss or knows someone who has had a loss!  It is not only the touching story surrounding the stillbirth of Bennett's granddaughter, but it also validates grandparents as grievers, discusses the process of redefining "normal" after the death of a grandchild, and touches on the complexity of being a grieving grandparent and a "strong" parent to your children who are suffering the loss of their child.  This book is not only helpful for grandparents to read, but it is also extremely enlightening for parents, aunts, uncles, other relatives, friends, healthcare providers, and clergy. 

The Good Grief Club (Monica Novak) is the true story of seven women who make a connection and form friendships through a perinatal loss support group.  It shares their stories as well as how they rebuilt their lives after their losses.

Living with Loss, Healing with Hope (a Jewish Perspective) (Rabbi Earl A. Grollman) is directed towards mourners of the Jewish faith but has been found helpful for those of any faith.  He guides readers through the journey of mourning, healing, and hope.  This book is not specifically about perinatal grief, but Grollman, an internationally recognized bereavement counselor, illuminates Judaism's recognition of the trauma of grief and of the mourner's responsibility eventually to return to the rhythm of life.

Losing Malcolm (Carol Henderson) tells the story of their son who was diagnosed three days after birth with a heart problem.  Malcolm ends up dying after an emergency surgery. Along with her expression of intense grief, most readers will relate to Henderson's accompanying feelings of inadequacy and guilt. Along that path she experienced mindless numbness, frustration, resentment of other women with their children, fear of her own body, and rage at people who dismissed her loss. Even when she became pregnant again, she felt that the new baby was "floating in a womb of tears." And yet she had the wisdom to embrace all these reactions as natural aspects of the grieving process.

Morgan’s Baby Sister (Johnson & Williams) is a story book for families who have experienced the loss of a baby.  It helps adults to see that children have very specific needs, including the need to grieve.  It also provides discussion questions.

Tear Soup, a recipe for healing after loss (Schwiebert & DeKlyen) is a family story book that centers on an old and somewhat wise woman, Grandy.  Grandy has just suffered a big loss in her life and so she is headed to the kitchen to make a special batch of Tear Soup.  This wonderful book recognizes and reinforces the fact that every person grieves in his or her own way.

Waiting with Gabriel (Amy Kuebelbeck) tells the journey of the author and her family as they prepare to deliver their baby boy who was diagnosed before birth with a fatal heart malformation. 

When a Meeting is Also a Farewell (Ingela Radestad) is about the author’s first child Ellen who died shortly before birth.  As a midwife and now mother of three, she wrote a book to help parents and those around them cope with the death of a very young child in a sensitive yet realist way.  The book includes personal interviews, letters, and poems as well as guidelines and suggestions for healthcare providers. 

Additional information about the book:

http://blog.cleveland.com/health/2008/08/pairs_book_on_perinatal_hospic.html