What Is Perinatal Hospice and Palliative Care?
By CRYSTAL BAI •
The short answer: Perinatal hospice and palliative care is a specialized form of support for families who receive a prenatal diagnosis of a life-limiting fetal condition — when a baby is not expected to survive long after birth, or may be stillborn. It allows families to continue the pregnancy with comprehensive medical and emotional support, making meaningful memories and creating a birth plan that honors the baby's expected short life.
What Is Perinatal Hospice?
Perinatal hospice is a program of care and support that begins at prenatal diagnosis of a life-limiting condition (such as Trisomy 18, anencephaly, or severe heart defects) and continues through birth, the baby's brief life if they survive, death, and bereavement. It is not about giving up — it is about creating the best possible experience within a painful reality.
Unlike adult hospice, perinatal hospice begins before birth. A team of specialists — perinatologists, neonatologists, palliative care physicians, social workers, chaplains, and nurses — works with the family to develop a birth plan that balances comfort care with the family's wishes for time with their baby.
What Perinatal Palliative Care Teams Do
- Prenatal support: Weekly or biweekly check-ins; space to grieve and ask questions; preparation for birth; creating a care plan
- Birth planning: Deciding where to deliver, who will be present, what interventions (if any) are wanted, and how to maximize time with the baby
- Memory making: Coordinating with Now I Lay Me Down to Sleep photographers; making handprints and footprints; recording the baby's heartbeat; choosing clothing and keepsakes
- Immediate post-birth care: Comfort care for the baby; pain management; skin-to-skin time; baptism or naming ceremonies if desired
- Bereavement support: Connecting families with peer support groups (like SOFT — Support Organization for Trisomy); grief therapy referrals; sibling support
Where to Find Perinatal Hospice Programs
Major academic medical centers with level IV NICUs typically have dedicated perinatal palliative care teams. The Perinatal Hospice and Palliative Care website (perinatalhospice.org) maintains a directory of programs by state. If your hospital doesn't have a formal program, ask for a perinatal palliative care consultation through the NICU or MFM (maternal-fetal medicine) department.
Death Doulas and Perinatal Loss
Some death doulas specialize in perinatal loss — supporting families through prenatal diagnosis, birth, the baby's brief life, and bereavement. This is emotionally demanding, specialized work requiring specific training. If you are in this situation, Renidy can help connect you with a doula who has specific perinatal bereavement training and experience.
Frequently Asked Questions
What is perinatal hospice?
Perinatal hospice is a program of care and support for families who receive a prenatal diagnosis that their baby is not expected to survive long after birth. It provides comprehensive medical, emotional, and spiritual support from diagnosis through birth, the baby's brief life, death, and bereavement.
Who qualifies for perinatal hospice?
Families who receive a prenatal diagnosis of a life-limiting fetal condition — such as Trisomy 18 or 13, anencephaly, severe congenital heart defects, or other conditions incompatible with long-term survival — may qualify for perinatal hospice and palliative care support.
Does choosing perinatal hospice mean giving up?
No. Perinatal hospice is about creating the best possible experience within a heartbreaking reality. It does not mean withholding care — it means focusing care on comfort and meaning. Families make informed choices about what interventions they want for their baby.
What is Now I Lay Me Down to Sleep?
Now I Lay Me Down to Sleep (NILMDTS) is a nonprofit that provides professional photography to families experiencing the loss of a baby — at birth or in the NICU. These photographs often become among the most treasured keepsakes a family has of their baby.
Can a death doula help with perinatal loss?
Yes. Some death doulas specialize in perinatal and pregnancy loss support — accompanying families through prenatal diagnosis, birth, the baby's brief life, and bereavement. This is specialized work requiring specific training. Ask potential doulas about their perinatal experience.
Renidy connects grieving families with compassionate end-of-life professionals. Find support near you.