Resources for Families


Newly Diagnosed? - start here





Perinatal Hospice and Palliative Care

WebMD - Neonatal Palliative Care: Focus on Life

Overview of palliative care for babies with a life-threatening condition

Perinatal 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.

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.

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.

Baby Center Message Board

Carrying/Carried Pregnancy Despite Poor or Fatal Prenatal Diagnosis - support group


Books

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 Kuebelbeck
A 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 Smith
In 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.

Still Birthday

A Pregnancy Loss is Still a Birthday. Resources for all kinds of loss; Before, during and after birth.


Support for Specific Diagnoses

Trisomy and Chromosome Disorders


Genetics Home Reference, National Institutes of Health

     What is Trisomy 18?

     What is Trisomy 13? 


SOFT - Support Organization for Trisomy 18, 13, and Related Disorders

A network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing.

International Trisomy 13/18 Alliance

A nonprofit organization offering trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources.

Trisomy 18 Foundation

A nonprofit organization whose mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families.

Noah's Never Ending Rainbow

A nonprofit organization whose mission is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with trisomy and related chromosome disorders.


Anencephaly


Anencephaly Info

Information about the birth defect anencephaly. Help for affected parents, caregivers, family and friends.


Families Stories

Inspiring stories of families that have carried to term with a life-limiting prenatal diagnosis

Carrying Colin  (Anencephaly)

video   website   blog   facebook


99 Balloons - Eliot  (Trisomy 18)

video   website   blog   facebook

Team Corbin  (Trisomy 13)

video   facebook

Zion Isaiah Blick

video