Birth Plans for the Unimaginable: Honoring Families Through Perinatal Palliative Care

By Dr. Solimar Santiago-Warner, LCSW, PMH-C

When most people imagine birth plans, they picture decisions about epidurals, music playlists, or skin-to-skin time. However, for families carrying a baby with a life-limiting condition, birth plans can become a sacred roadmap for connection, meaning, and memory in the face of profound grief.

This is the heart of perinatal palliative care (PPC). It’s not about giving up, but about showing up differently. It centers on the emotional, physical, and spiritual needs of parents navigating the in-between space of loving and preparing to lose a baby all at once.

As a clinician and perinatal palliative care social worker, I’ve witnessed the radical tenderness and quiet strength that PPC makes possible. It’s time we bring these conversations out of the shadows and into the broader perinatal mental health field because loss doesn’t exist outside postpartum, and grief doesn’t follow a timeline.

What Is Perinatal Palliative Care?

Perinatal palliative care is an interdisciplinary model of support offered from the time a baby is diagnosed with a condition that may limit their life, whether during pregnancy, at birth, or shortly after. It honors the complexity of grief, the beauty of bonding, and the dignity of choice.

PPC teams work with families to:

• Make informed decisions about medical interventions or comfort care 
• Create flexible and inclusive birth plans that reflect your family’s values and priorities.
• Support emotional, psychological, and spiritual needs.
• Facilitate memory-making, rituals, breastfeeding, and legacy-building. 
• Offer grief support during the postpartum period and beyond.

This model doesn’t replace hope; it expands it. It provides space to ask: What can we still do with the time we have? What matters most to you and your baby right now?

Grief Begins at the Moment of Diagnosis

One of the most misunderstood parts of perinatal loss is how early the grief begins. For many families, the moment of diagnosis, whether at 12 weeks or 32, is when everything changes. Time becomes uncertain. Joy is shadowed by fear. And yet, the baby is still very much alive.

Perinatal palliative care doesn’t wait for a loss to occur; it steps in with care, not cures. PPC validates anticipatory grief and offers language, rituals, and gentle planning for what’s ahead. It creates room for love, even in the midst of sorrow.

The Birth Plan as an Act of Love

I often say the PPC birth plan is not about control, but about agency in heartbreak. The support provided by the PCC team helps parents reclaim some sense of meaning and choice in a situation where so much is beyond their control.

A PPC birth plan may include:

• Who will be present at birth (family, chaplain, photographer).
• When and how to hold the baby.
• Religious or cultural rituals to honor the baby’s life.
• Comfort measures for the baby, birthing parent, and partner.
• How to create keepsakes such as photos, heartbeat recordings, and footprints. 
• Whether the baby will receive resuscitation or be held in comfort. 
• Language preferences (example: what parents want their baby to be called).

I’ve seen these plans transform sterile rooms into spaces of reverence. They allow families to parent, even in the shortest of lifespans. That act of being able to say, “I held them, I named them, I bathed them, I sang to them,” matters. It becomes part of the ongoing story that families carry forward.

The Postpartum Body After Loss

Too often, the postpartum experience after perinatal loss is erased or minimized. But the body remembers. Milk still comes in. Stitches still heal. Hormones still fluctuate. And the empty arms feel unbearably full of grief.

Postpartum support must recognize the embodied trauma of loss. This means: 

• Offering lactation support that includes milk suppression or donation options. 
• Acknowledging the emotional toll of postpartum physical changes. 
• Supporting body image after loss, especially when reminders feel cruel. 
• Providing trauma-informed care that understands the dual wound—physical and emotional.

Grieving families deserve doulas, OBs, nurses, and therapists trained in this landscape. Postpartum grief is postpartum, and it needs to be held as such.

Cultural and Spiritual Care Is Essential

There is no one way to grieve, love, or say goodbye to your baby. PPC must be intersectional in its approach, especially when working with BIPOC communities. Culturally responsive care includes:

• Asking about and honoring rituals, beliefs, and language.
• Creating space for prayer, chanting, ancestor connection, or silence. 
• Recognizing historical and racial trauma in medical settings
• Including traditional healers, faith leaders, or doulas in planning. 
• Supporting immigration, funeral, or naming customs that matter.

PPC must be adaptable and humble. It must never assume what healing looks like but instead ask with openness and compassion: What feels sacred to you?

Ongoing Support Beyond the Hospital

Discharge is not the end of the journey, but the beginning of a new chapter in grief. Parents need sustained, compassionate support long after they leave the hospital. This includes:

• Referrals to perinatal loss therapists.
• Peer support groups like those offered by PSI.
• Help navigate future pregnancies after loss.
• Partner support because non-birthing parents grieve as well.
• Sibling grief and extended family education.
• Creative therapies, rituals, and spaces to honor anniversaries.

And let’s not forget the professionals. Providers who bear witness to this kind of loss need supervision, processing, and acknowledgment of their grief. PPC is heart work, and hearts can break open, even in clinicians.

A Call to the Perinatal Mental Health Community

If you’re a therapist, nurse, birth worker, or postpartum doula, perinatal palliative care is your domain, too. You don’t need to be a palliative specialist to hold space for grief, to say a baby’s name, to support someone whose arms are empty but whose love is infinite.

Here’s what we can all do:

• Educate ourselves on PPC best practices.
• Partner with hospitals to create compassionate protocols.
• Join PSI’s bereavement trainings and groups.
• Refer families early, before the loss occurs.
• Center the family’s voice and values at every stage.

Grieving parents need multilayer and systemic support. Families deserve care that is as nuanced, loving, and enduring as the bond they share with their child.

Closing Thoughts

Perinatal palliative care reminds us that grief and love are not opposites, but are companions that allow families to parent in loss, bond amid uncertainty, and say goodbye with reverence, not regret. Let’s keep saying their names. Let’s continue to build systems that honor tiny lives in significant ways.

Remember, even in the darkest rooms, light is possible when we walk in holding love, listening deeply, and bearing witness to the fullness of their story.

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References

Santiago-Warner, S. (2024). Social work practice in perinatal palliative care: An overview. Social Work in Health Care, 63 (4-5), 248-262. https://doi.org/10.1080/00981389.2024.2316697

Wool, C., & Parravicini, E. (2020). The neonatal comfort care program: Origin and growth over 10 years. Frontiers in Pediatrics, 8, 588432. https://doi.org/10.3389/fped.2020.588432

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