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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Maternal-Fetal Medicine

Birth Planning and Palliative Care: Honoring Your Baby's Life

At a Glance

When facing an achondrogenesis diagnosis, perinatal palliative care allows families to create a peaceful birth plan focused entirely on the baby's comfort. By prioritizing skin-to-skin contact and declining futile medical interventions, parents can focus on bonding and creating lasting memories.

When you are facing a universally lethal diagnosis like achondrogenesis, the focus of medical care shifts away from aggressive intervention and turns entirely toward the quality of the time you have with your child. This approach is called perinatal palliative care [1][2].

Choosing palliative care does not mean you are “giving up.” It is an active, loving choice to provide a soft, dignified, and peaceful experience for your baby, ensuring their comfort and protecting them from pain [3][4].

Your Multidisciplinary Care Team

You will not navigate this alone. A “multidisciplinary team” means you have a circle of experts working together to support every aspect of your family’s experience [5]:

  • Maternal-Fetal Medicine (MFM): Focuses on the mother’s physical health, safely managing the fluid levels, and planning the safest delivery route [6].
  • Neonatology & Palliative Care: Newborn comfort experts who will ensure the baby experiences no pain or distress, and who will support your bonding time [3][7].
  • Social Work & Counseling: Professionals who provide emotional support, sibling counseling, and help with complex logistical planning [8].
  • Nursing & Bereavement Teams: Bedside angels who offer profound emotional support and gently guide you through the process of creating lasting memories [9][10].

Creating an “Advance Care” Birth Plan

A birth plan for a baby with achondrogenesis acts as an advance care directive. It tells the medical team exactly how you want your baby’s short life to be honored [11][12].

Choosing Comfort Over Futile Intervention

Standard newborn care for a baby struggling to breathe often includes aggressive measures, such as inserting a breathing tube (intubation) or performing chest compressions. In cases of lethal skeletal dysplasia with severe pulmonary hypoplasia, these interventions cannot save the baby’s life; they only prolong the dying process and cause unnecessary distress [13][14].

A palliative birth plan explicitly declines these measures and instead focuses on:

  • Immediate Skin-to-Skin Contact: Placing the baby directly on the mother’s or partner’s chest immediately after birth. This provides the ultimate warmth, regulates the baby’s heartbeat, and surrounds them with familiar voices [1].
  • Symptom Management: Using gentle techniques (and medications only if absolutely necessary) to ensure the baby is warm, held, and entirely pain-free [5][15].
  • A Peaceful Environment: Choosing not to use medical machines, heart monitors, or bright lights, allowing the atmosphere in the room to remain quiet, intimate, and family-focused [16].

The Power of Legacy and Memory-Making

Creating tangible mementos of your baby’s life is a cornerstone of perinatal palliative care. These acts are often called legacy-making interventions, and they have been shown to deeply aid in the long-term healing process for grieving parents [17][18].

  • Photography: Taking photos of the baby alone, and with you and your family. Many hospitals coordinate directly with volunteer organizations like Now I Lay Me Down to Sleep (NILMDTS), which provides sensitive, professional remembrance photography at no cost [18][9].
  • Physical Mementos: Creating ink handprints and footprints, taking plaster molds of the baby’s feet, saving a small lock of hair, or keeping the blanket and hat the baby wore [17][12].
  • Rituals and Traditions: Honoring your child through a bedside baptism, a naming ceremony, blessings, or other cultural and spiritual traditions that hold meaning for your family [10].

By planning these moments in advance with your palliative care team, you are creating a protected space where you can just be parents. You can be fully present, knowing that every detail has been thoughtfully arranged to honor your baby’s life and surround them with love [19][20].

Common questions in this guide

What is perinatal palliative care for achondrogenesis?
Perinatal palliative care focuses on ensuring your baby's comfort and protecting them from pain during their short life. Instead of aggressive medical interventions, the focus shifts to creating a peaceful, warm environment where you can bond with your baby.
Why are breathing tubes and chest compressions not recommended?
Because achondrogenesis involves severe underdevelopment of the lungs, aggressive interventions like intubation cannot save the baby's life. These measures often prolong the dying process and cause unnecessary distress, whereas palliative care ensures the baby remains completely comfortable.
What comfort measures are used instead of medical machines?
Palliative care prioritizes immediate skin-to-skin contact to regulate the baby's heartbeat and provide warmth. Care teams also use gentle wrapping and, if absolutely necessary, medications to manage symptoms and ensure the baby is entirely pain-free.
How can hospitals help us create memories with our baby?
Hospitals often collaborate with volunteer organizations to provide free professional remembrance photography. Nursing and bereavement teams can also help you create ink footprints, take plaster molds, save a lock of hair, or perform special spiritual rituals.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How will the palliative care team coordinate with the labor and delivery staff to ensure our birth plan is strictly followed?
  2. 2.What specific comfort measures (like warmth, gentle wrapping, or pain management if needed) will be used to keep our baby peaceful?
  3. 3.Can we have a dedicated, quiet room to spend time with our baby after birth, without the interruptions of standard monitors?
  4. 4.Can you help us coordinate professional photography or legacy-making services through the hospital?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (20)
  1. 1

    Perinatal Palliative Care: ACOG COMMITTEE OPINION, Number 786.

    Obstetrics and gynecology 2019; (134(3)):e84-e89 doi:10.1097/AOG.0000000000003425.

    PMID: 31441826
  2. 2

    "Yes to Life" and the Expansion of Perinatal Hospice.

    Kuebelbeck A

    Perspectives in biology and medicine 2020; (63(3)):526-531 doi:10.1353/pbm.2020.0041.

    PMID: 33416627
  3. 3

    Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses.

    Humphrey LM, Schlegel AB

    Seminars in pediatric neurology 2022; (42()):100965 doi:10.1016/j.spen.2022.100965.

    PMID: 35868733
  4. 4

    Development of a Perinatal Palliative Care Model at a Level II Perinatal Center Supported by a Pediatric Palliative Care Network.

    Bolognani M, Morelli PD, Scolari I, et al.

    Frontiers in pediatrics 2020; (8()):574397 doi:10.3389/fped.2020.574397.

    PMID: 33520884
  5. 5

    Recognising uncertainty: an integrated framework for palliative care in perinatal medicine.

    Wilkinson D, Bertaud S, Mancini A, et al.

    Archives of disease in childhood. Fetal and neonatal edition 2025; (110(3)):236-244 doi:10.1136/archdischild-2024-327662.

    PMID: 39567213
  6. 6

    Using MRI-derived observed-to-expected total fetal lung volume to predict lethality in fetal skeletal dysplasia.

    Mehollin-Ray AR, Stover S, Cassady CI, et al.

    Pediatric radiology 2024; (54(1)):43-48 doi:10.1007/s00247-023-05825-0.

    PMID: 38052986
  7. 7

    Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study.

    Tewani K, Singh R, Wendy CPY, et al.

    Palliative medicine 2023; (37(9)):1379-1388 doi:10.1177/02692163231171182.

    PMID: 37132995
  8. 8

    The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey.

    Tatterton MJ, Fisher MJ, Storton H, Walker C

    Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing 2023; (55(4)):864-873 doi:10.1111/jnu.12866.

    PMID: 36541193
  9. 9

    Legacy-making interventions in pediatric palliative care: A mixed methods systematic review.

    Deng C, Zheng R, Hong J, Guo Q

    Asia-Pacific journal of oncology nursing 2025; (12()):100694 doi:10.1016/j.apjon.2025.100694.

    PMID: 40421231
  10. 10

    Perinatal palliative care in low- and middle-income countries: a scoping review.

    Rent S, Titchiner D, Rholl E, et al.

    Annals of palliative medicine 2024; (13(6)):1420-1448 doi:10.21037/apm-24-87.

    PMID: 39632816
  11. 11

    Perinatal Palliative Care Birth Planning as Advance Care Planning.

    Cortezzo DE, Ellis K, Schlegel A

    Frontiers in pediatrics 2020; (8()):556 doi:10.3389/fped.2020.00556.

    PMID: 33014940
  12. 12

    Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

    Kenner C, Press J, Ryan D

    Journal of perinatology : official journal of the California Perinatal Association 2015; (35 Suppl 1()):S19-23 doi:10.1038/jp.2015.145.

    PMID: 26597801
  13. 13

    Further evidence for attenuated phenotype with variants in the BMPER gene causing DSD: Case report and literature review.

    Batey N, Spiller M, Balasubramanian M

    European journal of medical genetics 2022; (65(4)):104470 doi:10.1016/j.ejmg.2022.104470.

    PMID: 35240322
  14. 14

    Best practice guidelines regarding prenatal evaluation and delivery of patients with skeletal dysplasia.

    Savarirayan R, Rossiter JP, Hoover-Fong JE, et al.

    American journal of obstetrics and gynecology 2018; (219(6)):545-562 doi:10.1016/j.ajog.2018.07.017.

    PMID: 30048634
  15. 15

    Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope.

    Cortezzo DE, Vawter-Lee M, Shoaib A, Venkatesan C

    Frontiers in pediatrics 2023; (11()):1205543 doi:10.3389/fped.2023.1205543.

    PMID: 37334218
  16. 16

    The Path Is Made by Walking-Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study.

    Hein K, Flaig F, Schramm A, et al.

    Children (Basel, Switzerland) 2022; (9(10)) doi:10.3390/children9101555.

    PMID: 36291491
  17. 17

    Creating Evidence: Findings from a Grounded Theory of Memory-Making in Neonatal Bereavement Care in Australia.

    Thornton R, Nicholson P, Harms L

    Journal of pediatric nursing 2020; (53()):29-35 doi:10.1016/j.pedn.2020.04.006.

    PMID: 32344367
  18. 18

    Parent's Lived Experience of Memory Making With Their Child at or Near End of Life.

    Clarke T, Connolly M

    The American journal of hospice & palliative care 2022; (39(7)):798-805 doi:10.1177/10499091211047838.

    PMID: 34530625
  19. 19

    Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research.

    Zuo Y, Wang Y, Wang Z, et al.

    BMC palliative care 2025; (25(1)):33 doi:10.1186/s12904-025-01982-1.

    PMID: 41457264
  20. 20

    Improving Perinatal Palliative Care in the Communities: A Regional Population-Based Study.

    Takashima K, Hitosugi M, Yamamoto M, Maruo Y

    Maternal and child health journal 2025; (29(10)):1379-1386 doi:10.1007/s10995-025-04162-y.

    PMID: 40944801

This page provides educational information about perinatal palliative care for achondrogenesis. Please consult your maternal-fetal medicine and palliative care teams to develop a birth plan tailored to your family's unique wishes.

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