Palliative Care Resources

"Some say it would too hard to carry to term because I would be more attached to the baby than if I terminated early on. A harder thought for me to come to terms with was never knowing what my son looked like, smelled like, and how soft his skin was. Carrying to term allowed me to hold my child in my arms, to twirl his hair , to have him squeeze my finger and to be able to whisper in his ear and tell him how much he was loved. I chose the road less traveled by carrying to term but it was the best decision I have ever made, hands down."

Parent Testimonial

CARRYING TO TERM

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SOME OF THESE ITEMS MAY FOCUS ON A SPECIFIC DIAGNOSIS, BUT MUCH OF THE INFORMATION
IS RELEVANT TO ANY KIND OF LIFE-LIMITING PRENATAL DIAGNOSIS

• Alexandra’s House - Peer support perinatal hospice program
• Anencephaly - Information, facts, personal stories, pictures submitted by families.
• Be Not Afraid - Private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term.
• Caring Bridge - Free, personalized websites that parents can create to keep loved ones informed of their babies’ progress.
• Carrying To Term - Support and tools for carrying a pregnancy with a poor prenatal diagnosis to term.
• Cherishing the Journey - Comfort and guidance to families carrying a pregnancy with a poor prenatal diagnosis.
• Haven Network - The Haven Network, Northern Illinois' perinatal hospice and bereavement center, provides companionship on the grief journey to families who are facing a terminal diagnosis of their pre-born or newborn baby. The Haven Network also supports those families who have lost a baby through miscarriage, stillbirth, ectopic pregnancy, SIDS and early infant death.
• Healing Embrace -We work to raise awareness and provide support to families who experience pregnancy and infant loss.
• Isaiah’s Promise  - Christian support for families with a poor prenatal diagnosis.
• Love Not Lost - An organization that provides photography for families whose baby has a terminal diagnosis.  They also provide pregnancy photography.  Their services are at no cost to the family.
• Made, Born, and Carried: Lessons from Porter Gray - Christian-based blog written by a family whose unborn baby was been diagnosed with Trisomy 13.
• Now I Lay Me Down to Sleep - Bereavement photography group providing photo sessions for families and their newly born babies who are stillborn or have life-limiting conditions.
• Perinatal Hospice & Palliative Care - Resources, links, book suggestions.  Offers expectant parents and family members support and grief counseling throughout the mother's pregnancy and the birth and death of the baby.
• Poor Prenatal Diagnosis - Information for families facing decisions following a poor prenatal diagnosis.
• Recapture My Heart – A palliative care journey for a family with a diagnosis of anencephaly.
• The Little Green Family - Blog written by a family whose daughter was diagnosed with Trisomy 13.
• Sufficient Grace Ministries – Christian support offering comfort, encouragement and hope following a poor prenatal diagnosis.
• Tiny Treasure in Heaven - Christian-based blog site written by a couple whose son was born with Potter's Syndrome (bilateral renal agenesis).