PERINATAL HOSPICE & PALLIATIVE CARE

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BIRTH PLANNING

 

For information about birth plans and advance care plans for your baby, including links to sample birth plans, see the Birth Planning page on this site.

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ONLINE FORUMS FOR PARENTS CONTINUING THEIR PREGNANCIES

All That Love Can Do website and Facebook page, support for families who continue their pregnancies after a life-limiting prenatal diagnosis. Also see website for links to private Facebook groups for mothers, fathers, and grandparents

 

BabyCenter board: Carrying Pregnancy to Term Despite Poor or Fatal Prenatal Diagnosis  (public)

Anencephaly.info Facebook group (private group moderated by editor of Anencephaly.info, a website based in Switzerland and available in 10 languages)

 

HLHS Comfort Care private Facebook group for parents continuing their pregnancies with babies diagnosed with hypoplastic left heart syndrome and planning to provide palliative care after birth

 

The Journey of Carrying to Term Despite a Fatal Diagnosis private Facebook group

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Trisomy 18 Foundation Facebook group (private group for parents expecting a child with Trisomy 18, most of whom are continuing their pregnancies and are connecting to ask questions of other parents who also carried to term), moderated by the Trisomy 18 Foundation

 

Trisomy 18 Foundation online community, Carrying to Term (private)

 

Living with Trisomy 13 Facebook group (public)

 

REMEMBRANCE PHOTOGRAPHY

Now I Lay Me Down to Sleep, international network of infant bereavement photographers

 

Remember My Baby (U.K.)

 

Heartfelt (Australia and New Zealand)

Todd Hochberg Touching Souls: Healing with Bereavement Photography (Chicago)

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MEMOIRS AND OTHER HELPFUL BOOKS

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"Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life," by Amy Kuebelbeck (Loyola Press, Chicago, 2003)

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"A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief," by Amy Kuebelbeck and Deborah L. Davis, Ph.D. (Johns Hopkins University Press, Baltimore, 2011)

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"Empty Cradle, Broken Heart: Surviving the Death of Your Baby," by Deborah L. Davis, Ph.D. (Fulcrum Publishing, Golden, Colorado, 2016)

 

"The Song of the Whole Wide World: On Grief, Motherhood and Poetry," by Tamarin Norwood (The Indigo Press, London, U.K., 2024)

 

"Loving Samuel: Suffering, Dependence and the Calling of Love” by Aaron Cobb (Cascade Books, Eugene, Oregon, 2014)

 

“The Heart of Jesús Valentino: A Mother’s Story” by Emma Gilkison (Awa Press, Wellington, New Zealand, 2018)

 

“Perfectly Human: Nine Months with Cerian” by Sarah C. Williams (Plough Publishing House, Walden, New York, 2018)

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"Carrying to Term: A Guide for Parents After a Devastating Prenatal Diagnosis," by Jane Lebak (Philangelus Press, 2017)

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"Our Baby Is Loved: A Story for Children Whose Parents or Loved Ones are Expecting a Baby with a Life-Threatening Medical Condition," by Abigail Gellene-Beaudoin LCSW APHSW-C (author) and Seth Lubaton illustrator)

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WEBSITES RELATED TO CONTINUING A PREGNANCY

Antenatal Results and Choices (U.K.): Continuing a Pregnancy

Be Not Afraid 

Carrying to Term Pages
 

CarryingToTerm.org

 

Count the Kicks (U.K.): Continuing a pregnancy following fatal or poor diagnosis

Every Life Counts (Ireland), perinatal hospice advocacy and information & support for parents  

HealthTalkOnline patient experiences about continuing a pregnancy, University of Oxford, England

Isaiah's Promise, parent-to-parent support

Joan's Reach, support, advocacy, and professional referrals

One Day More (Ireland), parent-to-parent support 

 

Perinatal ComfortCare

Prenatal Partners for Life, parent-to-parent support

Pietá ministry

Prenatal Diagnosis Support Australia

Rowan Tree Foundation

Stillbirthday.com Neonatal Death/Fatal Fetal Diagnosis (birth plans and many resources)

Sufficient Grace Ministries Perinatal Hospice and Bereavement Services

Waiting with Love
 

 

INFORMATION ABOUT CONTINUING PREGNANCIES WITH SPECIFIC CONDITIONS

Anencephaly Information, available in 10 languages

 

HLHS Comfort Care, addressing the non-surgical option for babies with hypoplastic left heart syndrome. Also a private Facebook group for parents

Limb-Body Wall Complex.net

MUMS National Parent-to-Parent Support Network

Poor Prenatal Diagnosis.com

Potter's Syndrome.org

Pregnant with multiples:  

 

• Center for Loss in Multiple Birth, "Knowing ahead"

• Anencephaly Information "Coping with anencephaly in a twin pregnancy"

Trisomy 18 and Trisomy 13:

 

• International Trisomy Alliance, which also has produced a free online booklet, "Preparing For Your Baby's Arrival"

• S.O.F.T. Support Organization for Trisomy 18, 13, and related disorders — Trisomy 13 (Patau Syndrome), Trisomy 18 (Edwards Syndrome), triploidy, and others

• Trisomy 18 Foundation information about carrying to term, plus several online forums and a private Facebook group

• Trisomy 18 Support

• The video "99 Balloons," as seen on Oprah and NBC's Today Show

• The video "Baby Amanda," produced by the National Hospice and Palliative Care Organization

• Living with Trisomy 13 support

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PALLIATIVE CARE AND CARING FOR A CHILD WITH A SERIOUS CONDITION AFTER BIRTH

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Courageous Parents Network, a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness

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Center to Advance Palliative Care Pediatric Palliative Care

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National Hospice and Palliative Care Organization Pediatric Palliative and Hospice Care

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RESOURCES FOR SIBLINGS

 

"Our Baby Is Loved: A Story for Children Whose Parents or Loved Ones are Expecting a Baby with a Life-Threatening Medical Condition," by Abigail Gellene-Beaudoin LCSW APHSW-C (author) and Seth Lubaton illustrator)

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Parents often worry about how continuing a pregnancy with a baby who has a life-limiting condition will affect their older children. The website anencephaly.info (based in Switzerland and translated into multiple languages) has a page with excellent and poignant advice.

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GENERAL SUPPORT FOR MISCARRIAGE & INFANT LOSS

 

Babyloss.com (U.K.)

 

Babyloss Family Advisors, providing birth plans and one-on-one support by parent advocates

Babies Remembered

Brief Encounters

Féileacáin, Stillbirth and Neonatal Death Association of Ireland

1st Breath stillbirth support

Hope After Loss

Infants Remembered in Silence

M.E.N.D. (Mommies Enduring Neonatal Death)

MISS Foundation

Pregnancy Loss Support Program, a service of the National Council of Jewish Women, New York

Return to Zero Center for Healing, Emmy-nominated movie about stillbirth, and related resources

SANDS Stillbirth and Neonatal Death Society, Australia

SANDS Stillbirth and Neonatal Death Society, England

 

SANDS Stillbirth and Neonatal Death Society, New Zealand

SHARE Pregnancy and Infant Loss Support, providing parent support and education since 1977

Stillbirthday, birth plans and many resources

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Stillborn and Infant Loss Support

The Solace Foundation

Star Legacy Foundation stillbirth research and support

Sweet Pea Project resources for parents and a blanket-donation project for hospitals

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ORGAN/TISSUE/CORD BLOOD DONATION

 

Association of Organ Procurement Organizations (U.S.)

International Institute for the Advancement of Medicine, donation for research

Purposeful Gift, information about neonatal donation for transplant or research

 

The Cord Blood Center and informational site for parents cordbloodguide.com

"Flash and His Gift," video depicting one family's experience, also available in Spanish

Mini-documentary "Amalya," about a family whose baby was diagnosed prenatally with anencephaly and was able to be a donor for research

"Newborn baby Teddy was UK's youngest-ever organ donor," BBC News, April 23, 2015.

A special note about anencephaly: A baby born alive with this condition still has some brain function and does not usually meet the criteria for brain death. (See this position statement from the Canadian Paediatric Society.)

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FUNERAL RESOURCES

Crossings: Caring for Our Own at Death—A Home Funeral and Green Burial Resource CenterInformation about caring for your baby's body and holding a vigil in your home

 

Planning a Precious Goodbye Booklet about planning a memorial service for your baby

National Home Funeral Alliance

Olivia Raine Foundation Financial assistance for funeral-related expenses for infants

"Providing after-death care at home when a baby dies," by Deborah L. Davis Ph.D., Psychology Today, March 3, 2014.

"Transporting your baby," information about bringing your baby's body home before burial or to a funeral home, from SANDS New Zealand

Trappist monks from New Melleray Abbey in Iowa build infant-sized caskets out of sustainable red oak harvested from the abbey's forest; infant caskets are provided free of charge as a ministry to families

When Your Baby Dies Information about bringing your baby's body home for a brief time with your family and/or holding a home funeral (a growing practice in the U.S. and a common practice in other countries)

The book A Gift of Time also includes parent stories about bringing their baby's body home before the funeral or holding a vigil and funeral at home.

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DOULA SUPPORT

 

Loss Doulas International, one-on-one support to families facing the loss of a baby in miscarriage, stillbirth, or early infant death. Includes a state-by-state listing.

Asheville Doula Services. Support from a certified birth and postpartum doula with specialized training in perinatal loss. Asheville, North Carolina

 

Beyond the Rain, doula support in Janesville, Wisconsin

Ethan's Hope: Anencephaly Care, offering bereavement doula support specializing in anencephaly in the Atlanta, Georgia area. Contact: Lauren Bishop, (770) 658-9968. 

Katje Sabin, Chicago, Illinois

 

Healing Grace Birth Support, offering bereavement doula support in the upstate and midlands areas of South Carolina

 

Mending Heart Bellies bereavement doula support, in the Philadelphia area (also in conjunction with Lily's Gift) 

 

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RESOURCES IN SPANISH

 

Sample birth plans

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Cuidados paliativos perinatales: Cuando es probable que la vida de vuestro hijo sea breve; Generalitat de Catalunya Departament de Salut

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"En espera del nacimiento y del fallecimiento al saber que su bebé no podrá vivir" brochure from RTS Bereavement Services/Gundersen Health System

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OTHER RESOURCES

CaringBridge Free Web pages to keep family and friends informed about your baby.

Certificates of Birth Resulting in Stillbirth Legal documents available in some states for babies who are born still.

Faith's Lodge in Webster, Wisconsin. A peaceful wooded retreat for families who currently have a child with a serious illness or have suffered the recent loss of a child.

Nickolas' Gift Care packages and memory boxes provided free to families.

Spare Key Housing-grant assistance for families in Minnesota, North Dakota, South Dakota, and Wisconsin with a seriously ill or critically injured child.
 

Advice regarding lactation after a loss: journal article in Clinical Lactation; Mother Nurture lactation consultant; information from A Gift of Time.

(Note: Inclusion in this list is not a guarantee of the quality of these websites or their services and products; please make your own decisions about what is helpful to you.)