FEATURED RESOURCES FOR PARENTS
Now I Lay Me Down to Sleep, an international network of trained photographers who provide free remembrance photography for parents suffering the loss of a baby. (See also this article about perinatal hospice, written by Amy Kuebelbeck for their 10th anniversary commemorative magazine)
CaringBridge, free websites to keep family and friends informed about your baby
A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to be Brief, a gentle and practical guide for parents who are — or are considering — continuing their pregnancy knowing that their baby's life will be brief
Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life, a memoir about prenatal diagnosis, continuing a pregnancy, and embracing a baby's life. (Read an excerpt here)
FEATURED VIDEOS FOR PARENTS
SAMPLE BIRTH PLANS
Birth plan basics from A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press)
St. Joseph Hospital (Orange, Calif.) Perinatal Comfort Care birthing plan
Texas Pediatric Society perinatal palliative care birth plan
Birth/parenting plans from Anencephaly.info, a multilingual resource site
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 fatal 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)
Facebook group: Anencephaly.info (private group moderated by editor of Anencephaly.info, a website based in Switzerland and available in 10 languages)
Facebook group: Trisomy 18 Foundation Parents Connect (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)
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)
WEBSITES RELATED TO CONTINUING A PREGNANCY
Antenatal Results and Choices (U.K.): Continuing a Pregnancy
Be Not Afraid
Carrying to Term Pages
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
Prenatal Partners for Life, parent-to-parent support
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
Limb-Body Wall Complex.net
MUMS National Parent-to-Parent Support Network
Poor Prenatal Diagnosis.com
Pregnant with multiples:
Trisomy 18 and Trisomy 13:
Infants Remembered in Silence
M.E.N.D. (Mommies Enduring Neonatal Death)
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
SOURCES FOR PURCHASING RELEVANT BOOKS AND OTHER MATERIALS
A Gift of Time is available from Johns Hopkins University Press , Amazon.com, Amazon.co.uk, and other booksellers.
Waiting with Gabriel is available from Loyola Press, Amazon.com, Amazon.co.uk, and other booksellers. The Italian translation is available as an e-book from Amazon.it.
Empty Cradle, Broken Heart and other books by Deborah Davis Ph.D. for parents experiencing pregnancy loss and infant death are available from Amazon.com and other booksellers.
A Place to Remember Books, birth/death announcements, baby books, sympathy cards, and other resources specifically for the loss of a baby
Family Lasts Forever: A Very Special Baby Book by Sheila B. Frascht & Noelle K. Andrew
Centering Corporation Many books related to grief and healing
Gift of a Lifetime Booklet for parents briefly describing the choice of carrying to term; available from Focus on the Family
Loyola Press Books related to grief, spirituality, and healing
RTS Bereavement Services, source for many materials including the brochure "Waiting for Birth and Death: Knowing Your Baby Will Not Survive" (also available in Spanish)
Webcast from Now I Lay Me Down to Sleep: "Write Your Baby's Story," featuring NILMDTS co-founder Cheryl Haggard, NILMDTS CEO Gina Harris, and author Amy Kuebelbeck
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
"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.)
Crossings: Caring for Our Own at Death—A Home Funeral and Green Burial Resource Center Information about caring for your baby's body and holding a vigil in your home
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; discounted or donated caskets available to families in need
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.
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
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
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.
(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.)
Featured resources • Featured videos for parents • Birth plans
Online forums • Websites related to continuing a pregnancy
Information about specific conditions • Perinatal bereavement • Photography
Books • Organ donation • Funeral resources • Doulas • Other resources