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

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


Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life




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


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)




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


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

Limb-Body Wall Complex.net

MUMS National Parent-to-Parent Support Network

Poor Prenatal Diagnosis.com

Potter's Syndrome.org

Pregnant with multiples:  



Trisomy 18 and Trisomy 13:





PERINATAL BEREAVEMENT


Babyloss.com (U.K.)

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


The Solace Foundation

Star Legacy Foundation stillbirth research and support

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




PERINATAL BEREAVEMENT PHOTOGRAPHY


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

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




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)
 



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

"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.)




FUNERAL RESOURCES


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.




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

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




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.
  



(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.)


RESOURCES FOR PARENTS

PERINATAL HOSPICE & PALLIATIVE CARE

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