Newly Diagnosed? - start here
Joan's Reach Support Group
A closed Facebook group for parents experiencing a life-limiting diagnosis for their unborn child, either currently or in the past. It is a private place for parents to share support, information, and hope for continuing the pregnancy and beyond.
Perinatal Hospice and Palliative Care
WebMD - Neonatal Palliative Care: Focus on Life
Overview of palliative care for babies with a life-threatening conditionPerinatal Hospice
Perinatal Hospice on Facebook
Perinatal hospice and palliative care is an innovative and compassionate model of support that can be offered to parents who find out during pregnancy that their baby has a life-limiting condition.Now I Lay Me Down to Sleep
Providing the gift of remembrance photography for parents suffering the loss of a baby.Carrying To Term
A non-profit organization dedicated to helping parents gather the support, tools, and resources necessary to navigate the range of questions and emotions accompanying a terminal prenatal diagnosis, and the decision to carry a pregnancy to term—all while embracing and celebrating precious memories with your baby.
Be Not Afraid
An online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.Prenatal Partners for Life
Support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth.All That Love Can Do
Support for families who continue their pregnancy after a fatal diagnosis.Includes online resources and private groups to connect with other families.
Baby Center Message Board
Carrying/Carried Pregnancy Despite Poor or Fatal Prenatal Diagnosis - support groupBooks
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.A Gift of Time is 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
By Amy KuebelbeckA memoir about prenatal diagnosis, continuing a pregnancy, and embracing a baby's life.
I Will Carry You: The Sacred Dance of Grief and Joy
By Angie SmithIn 2008, Angie Smith and her husband Todd (lead singer of the group Selah) learned through ultrasound that their fourth daughter had conditions making her “incompatible with life.” Advised to terminate the pregnancy, the Smiths chose instead to carry this child and allow room for a miracle. That miracle came the day they met Audrey Caroline and got the chance to love her for the precious two-and-a-half hours she lived on earth.
Bereavement
Share Pregnancy & Infant Loss Support
Serving those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth or in the first few months of life.MISS Foundation
A community of compassion and hope for grieving families.Providing C.A.R.E. [counseling, advocacy, research, and education] services to families experiencing the death of a child.