Perinatal Hospice and Palliative Care
A Gift of Time

Resources for parents

 
FEATURED RESOURCES FOR PARENTS

Now I Lay Me Down to Sleep, a national network of professional photographers who volunteer to provide tender and tasteful remembrance photography of babies before or after death.

CaringBridge, free websites to keep family and friends informed about your baby.


Sample birth/parenting plan, downloadable here.


  
 Featured videos for parents

  



  
  





 Online forums for parents
BabyCenter message board: Carrying Pregnancy to Term Despite Poor or Fatal Prenatal Diagnosis (public)

Carrying to Term discussion forum sponsored by Now I Lay Me Down to Sleep (public)

All That Love Can Do website and Facebook page, support for families who continue their pregnancies after a fatal diagnosis

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), run by the Trisomy 18 Foundation

Facebook group: Carrying to Term Perinatal Hospice Support (private group created by Sufficient Grace Ministries/Walking with You)

Facebook group: Carrying to Term Despite a Poor Prenatal Diagnosis (open group created by Perinatal ComfortCare)

Facebook group: Carrying to Term After Fatal Diagnosis (private group created by parents in Ireland)

Facebook group: Anencephaly.info (private group moderated by editor of anencephalie-info.org, available in 10 languages)


 Websites related to continuing a pregnancy

A Baby's Legacy

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

Be Not Afraid

Carrying to Term Pages

Every Life Counts, an online outreach for parents (Ireland) 

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

Isaiah's Promise, providing support from parents who received a poor prenatal diagnosis and carried to term

Joan's Reach, providing support, advocacy, and professional referrals for families facing a live-limiting prenatal diagnosis

Living with Trisomy 13 perinatal hospice information

MISS Foundation online support forums, "Fatal Diagnoses During the Prenatal Period" and "Pediatric Hospice Support"

MISS Foundation Perinatal Palliative CARES Facebook page (private group)

One Day More, a parent-to-parent support group in Ireland for parents continuing a pregnancy following a prenatal diagnosis

Prenatal Partners for Life

Pietá ministry for negative prenatal diagnosis

Prenatal Diagnosis Support Australia

Rowan Tree Foundation

Stillbirthday.com (birth plans and many resources)

Sufficient Grace Ministries perinatal hospice and bereavement support

Waiting with Love



 Information about continuing pregnancies with specific conditions


Anencephaly Information (also in German, French, Spanish, Dutch, Portuguese and Italian)

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

Trisomy 18 and Trisomy 13:

 Perinatal bereavement
Babyloss.com (U.K.)

Babies Remembered

Brief Encounters

Féileacáin, Stillbirth and Neonatal Death Association of Ireland

Gentle Birth (loss resources from a midwifery perspective)

Hygeia Foundation (resources for parents and professionals)

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 Section (individual telephone peer-support counseling available)

SANDS Stillbirth and Neonatal Death Society (Australia)

SANDS Stillbirth and Neonatal Death Society (England)

SHARE Pregnancy and Infant Loss Support

Stillbirthday (birth plans and many resources for various types of perinatal loss)

The Solace Foundation (resources for parents)

Sweet Pea Project (resources and support for parents and a blanket-donation project for many hospitals)

 
Perinatal bereavement photography


Now I Lay Me Down to Sleep (national network of infant bereavement photographers)

Todd Hochberg Touching Souls: Healing with Bereavement Photography


 Loss doulas

Loss Doulas International, providing 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

Katje Sabin, Chicago, Illinois


 Sources for purchasing 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 from Edizioni San Paolo and Amazon.it.

A Place to Remember (books, birth/death announcements, baby books, sympathy cards, and other resources specifically for the loss of a baby)

Centering Corporation

Fulcrum Publishing

Gift of a Lifetime (booklet for parents briefly describing the choice of carrying to term; available from Focus on the Family)

Loyola Press

RTS Bereavement Services, including the brochure "Waiting for Birth and Death: Knowing Your Baby Will Not Survive" (also available in Spanish)

 
Organ donation

Association of Organ Procurement Organizations

International Institute for the Advancement of Medicine (donation for research)

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



 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.

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

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

Trappist Caskets Monks from New Melleray Abbey in Iowa build infant-sized caskets out of sustainable red oak harvested from the abbey's forest.

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).

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


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 unique 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: We cannot guarantee the quality of these websites or their services and products, and we ask that you make your own decisions about what is helpful to you.)