Northside Hospital Perinatal Loss Office

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Perinatal Palliative Care 
 
This section provides information, resources, and support for parents whose babies have received a life-limiting diagnoses during the pregnancy.  Some examples of a life-limiting diagnosis:  Trisomy 13 or 18, Anencephaly, Hypoplastic Left Heart Syndrome or other fatal heart problems, or Skeletal Dysplasia.
 
If you are a parent who is in this situation, we are sorry that you have to be here but are very glad that you chose to find us.  We would like to support you and assist you in any way that we can.
 
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 months, 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.  
 
Palliative Care is also called"comfort care" because the focus is not on treatments that cure or prolong life but on family-centered care that promote quality of life, not matter how short.  

 

How to Contact Our Office:
Phone (404) 851-8177
 

 

Some of the things that we can provide for you and your family:

A member of the Perinatal Loss and/or Perinatal Palliative Team 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, Neonatology, Anesthesia, Nursing, Pastoral Care, Pediatrics, Hospice, Case Management, Healthy Psychology, etc)

 

Telephone and emotional support during the pregnancy and after delivery

 

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

 

Assistance 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 experiences

 

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

 

Literature, online resources, and books pertaining to palliative care, creating memories with your baby, and planning your goodbye

 

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

 

Memorial opportunities such as the annual Atlanta Walk to Remember

 

Websites: 

Some items may focus on a specific diagnosis, but much of the information is relevant to any kind of life-limiting prenatal diagnosis.

 

This website offers a lot of information, resources, links, book suggestions, and more:

http://perinatalhospice.org/Home_Page.html

 

Free, personalized websites that parents can create to keep loved ones informed of their babies’ daily progess:  http://www.caringbridge.org/

 

Now I Lay Me Down to Sleep: Bereavement photography group providing photo sessions for families and their newly born babies who are stillborn or have life-limiting conditions (no charge www.nowilaymedowntosleep.org

   

Article about perinatal hospice written by a nurse whose niece died two weeks after birth due to VATER Syndrome: http://dying.about.com/od/pediatriccare/a/perinatal.htm

 

Anencephaly information, facts, personal stories, pictures submitted by families: www.anencephalie-info.org/e/Anouk.htm 

Holoprosencephaly information, resources, support: http://www.holoprosencephaly.net/Holoprosencephaly

 

Carter Centers for Brain Research in Holoprosencephaly and Related Malformations:

http://www.stanford.edu/group/hpe/

 

Lissencephaly: personal story http://www.benotafraid.net/story.asp?id=48

 

Video made by family during their pregnancy and the 99 days they had with their baby (Trisomy 18): http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

 

Anencephaly:  Family’s blog and personal slide show shown at memorial service (faith-based music plays during slideshow and some blog entries quote scripture):  http://the-smith-family.blogspot.com/2006/11/chase-slideshow.html

 

Article and video about perinatal hospice and a baby with Trisomy 18): http://www.nytimes.com/2007/03/13/health/13hospice.html

 

New clip about a baby born with Trisomy 18 who is considered a rare, long-term survivor (parents discuss both the joys and the challenges):  http://wcco.com/video/?id=6888@wcco.dayport.com

 

Holoprosencephaly (family’s personal photo montage of their daughter’s short life): http://www.onetruemedia.com/otm_site/view_shared?p=2382f86701e9fa6e8412a5&skin_id=601&utm_source=otm&utm_medium=text_url

 

News clip about perinatal hospice: http://video.nytimes.com/video/2007/02/08/health/1194817113313/perinatal-hospice-care.html

 

Article about creating memories and spending time with your home during his/her life that is all-too short:  http://www.mlive.com/living/kalamazoo/index.ssf/2009/08/when_parents_know_theyll_lose.html

 

BY FAR ONE OF THE BEST SERIES OF ARTICLES AND VIDEO BUT BE AWARE THE VIDEO IS VERY EMOTIONAL, DETAILED, AND SHOWS A BABY WHO IS IN THE PROCESS OF DYING.

Dallas Morning News series:  Baby had Trisomy 13.  Video has parent’s personal story, print information and story, video and sound from pregnancy, pregnancy blog, choosing a casket, the actual delivery, going home with hospice care, spending time with baby, joys and challenges, last moments with the baby, baby’s death, saying goodbye, funeral, a subsequent pregnancy. http://www.dallasnews.com/s/dws/photography/2009/thomas/

 

Touching personal story including some unique ways to pay tribute to your baby’s memory: http://www.clevelandmagazine.com/ME2/dirmod.asp?sid=E73ABD6180B44874871A91F6BA5C249C&nm=Arts+%26+Entertainemnt&type=Publishing&mod=Publications%3A%3AArticle&mid=1578600D80804596A222593669321019&tier=4&id=903C2FBF2DB84145894CC2BD68EA30FB

 

MSNBC news article and video (Trisomy 18): http://www.msnbc.msn.com/id/23682263/

 

Children’s Project on Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care Organization:  http://www.nhpco.org/files/public/ChiPPS/February-2007_enews.htm

 

Article about parents using perinatal hospice:

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

 

Article about family whose baby had Trisomy 18 (includes slide show): http://www.mlive.com/living/grand-rapids/index.ssf/2009/10/family_shares_how_hospice_prog.html

 

Alexandra’s House (a peer support perinatal hospice program):  www.alexandrashouse.com

   

Visiting Nurse Health System (Information about the Atlanta Hospice bereavement programs): http://www.vnhs.org/services/bereavement.aspx

 

 

Recommended Reading:

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.

 

Forgotten Tears:  A Grandmother's Journey Through Grief (Nina Bennett) is 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.

   

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.

   

Silvie's Life (Marianne Rogoff) Imagine a joyous, healthy pregnancy, a well-thought out birth plan, a normal labor, a baby who doesn't cry, who lies limp on her mother, and is raced by helicopter to a hospital with an intensive care nursery. There the nightmare becomes reality, a baby born with severe brain damage, with no identifiable cause. One week after Silvie's birth, her parents are advised to take her home to die. The doctors guessed that she would die in a few days; those days stretched into weeks, accumulated into months. Rogoff's luminous memoir details the conflicting emotions she and her husband felt as they continuously braced themselves for their baby's death. Her descriptions of living in limbo, trying to balance hope with reality, are powerful.

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 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.