Perinatal Palliative Care
Introducing...
We are so excited to announce that our Perinatal Palliative Care Program now has a name! We feel that the name "H.E.A.R.T.strings" exemplifies every aspect of our program. Our goal is to prevent and relieve suffering and to support the best possible quality of life for infants and their families, regardless of the stage of the disease or the need for other therapies.
Additionally, palliative care optimizes function and helps with decision making. It can be
delivered concurrently with life- prolonging care, aggressive comfort therapies or as the
main focus of care.
Additionally, palliative care optimizes function and helps with decision making. It can be
delivered concurrently with life- prolonging care, aggressive comfort therapies or as the
main focus of care.
What is Palliative Care?
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.
What do we do?
We work with families who are referred to us by their obstetricians and/or perinatologists. Our palliative care team meets with these families to make a plan of care for their delivery and for the care of their infant, based on their wishes for their experience. We then work with Labor and Delivery, High Risk Perinatal, and Special Care Nursery staff to implement the family's plan of care.
How can you be referred to the H.E.A.R.T.strings program?
Any family who has been given a fatal diagnosis for their unborn baby can contact us directly at 404-851-8177 or by email at northsidepnl@gmail.com. We will then contact your obstetrician for a referral. You can also speak to your obstetrician and/or maternal-fetal specialist and have them contact us.
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.
What do we do?
We work with families who are referred to us by their obstetricians and/or perinatologists. Our palliative care team meets with these families to make a plan of care for their delivery and for the care of their infant, based on their wishes for their experience. We then work with Labor and Delivery, High Risk Perinatal, and Special Care Nursery staff to implement the family's plan of care.
How can you be referred to the H.E.A.R.T.strings program?
Any family who has been given a fatal diagnosis for their unborn baby can contact us directly at 404-851-8177 or by email at northsidepnl@gmail.com. We will then contact your obstetrician for a referral. You can also speak to your obstetrician and/or maternal-fetal specialist and have them contact us.
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
Blog site written by a family whose daughter was diagnosed with Trisomy 13:
www.thelittlegreenfamily.blogspot.com
A Christian-based blog site written by a couple whose son was born with Potter's Syndrome (bilateral renal agenesis):
http://tinytreasureinheaven.wordpress.com/
A Christian-based blog written by a family whose unborn baby has been diagnosed with Trisomy 13:
http://lessonsfromportergray.blogspot.com
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
Lissencephaly personal story:
http://www.benotafraid.net/story.asp?id=48
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
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
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 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
Ideas for having an Angel Shower:
http://www.walktoremember-ie.org/angel-shower.html
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
Blog site written by a family whose daughter was diagnosed with Trisomy 13:
www.thelittlegreenfamily.blogspot.com
A Christian-based blog site written by a couple whose son was born with Potter's Syndrome (bilateral renal agenesis):
http://tinytreasureinheaven.wordpress.com/
A Christian-based blog written by a family whose unborn baby has been diagnosed with Trisomy 13:
http://lessonsfromportergray.blogspot.com
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
Lissencephaly personal story:
http://www.benotafraid.net/story.asp?id=48
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
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
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 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
Ideas for having an Angel Shower:
http://www.walktoremember-ie.org/angel-shower.html
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.
Bittersweet...hello goodbye. A Resource in Planning Farewell Rituals when a Baby Dies (edited by Lamb) Guidance and specific suggestions for creating a meaningful memorial service
Creating Meaningful Funeral Ceremonies: A Guide for Families (Wolfelt) Practical ideas for creating authentic, personalized, and meaningful funeral ceremonies
Fly Away Home: For Bereaved Parents who Turned Away from Aggressive Medical Intervention for their Critically Ill Child (Davis) Looks at parents' experiences and emotions around medical ethics, decision-making, living in the shadow of death, and finding peace.
Goodbye My Child (Wheeler & Pike) Guide for newly bereaved parents. Talks about funeral planning, differences in losses, the five phases of mourning, men and women grief, grandparents, your other children, family and friends and picking up the pieces.
Loving and Letting Go (Davis) This books is designed for parents who decide to reject aggressive medical intervention for their critically ill newborns. It includes chapters on facing the decision, the dilemmas of withdrawing artificial support and a gentle final chapter, "Letting Go With Love."
Making Loving Memories (Eddy & Raydo) For first things to do and simple funeral planning. A small book packed with realistic ideas.
Planning a Precious Goodbye (Ilse & Martinez) Specific suggestions for creating a meaningful memorial service for their baby who has died
When a Child Dies: A Resource for Families (Charles & Ciepielinski) They cover everything from funeral & memorial planning to helping surviving siblings; from announcements to thank you cards; from support for parents to tips on how family, friends, caregivers can actually be helpful.
