Perinatal Palliative Care
Receiving a life-limiting or fatal diagnosis for your baby can feel overwhelming. You may be faced with unexpected decisions while trying to process complex emotions and medical information. No matter what path you choose, you deserve compassionate, individualized support.
What is Perinatal Palliative Care?
Perinatal palliative care is specialized support for families who receive a life-limiting or serious fetal diagnosis. It focuses on caring for you, your baby, and your family by providing medical information, emotional support, practical guidance, and help navigating the decisions ahead.
Perinatal palliative care is not the same as hospice or giving up hope. It can be provided alongside treatments that aim to prolong your baby's life or improve comfort. You do not have to have certainty about your baby's diagnosis or prognosis before receiving perinatal palliative care services.
Whether you continue your pregnancy or end your pregnancy for medical reasons, perinatal palliative care is centered on honoring your values and supporting the decisions that are right for your family.
How Can a Perinatal Palliative Care Team Help?
You don't have to navigate this journey alone. A perinatal palliative care team works alongside your existing healthcare providers to provide emotional, practical, and logistical support throughout your pregnancy and beyond. They do not replace the specialists caring for you and your baby—instead, they help ensure you have the information, resources, and support you need.
Your team may include physicians, nurses, social workers, chaplains or spiritual care providers, child life specialists, mental health professionals, and bereavement or family support specialists. Together, they can help you:
Understand your baby's diagnosis and treatment options
Navigate difficult decisions while honoring your values and goals
Coordinate care between your healthcare providers
Create a personalized birth plan
Explore memory-making opportunities
Connect with emotional, spiritual, financial, and community resources
Support you and your family before, during, and after your baby's birth
I Just Received a Diagnosis, Where Do I Start?
Receiving a life-limiting or fatal diagnosis for your baby can feel overwhelming. You may still be meeting with specialists, undergoing additional testing, or hoping for more information about your baby's condition. It is normal to feel in shock, numb, and unsure of what comes next.
No parent expects to find themselves in this situation. You may be grieving the future you imagined while trying to understand what this diagnosis means for your baby and your family. Whatever path lies ahead, you do not have to navigate it alone.
There is no single place to begin, and you do not have to figure everything out today. These first steps can help you gather information, build your support system, and prepare for the journey ahead.
Learn what you can about your baby's diagnosis.
Write down questions for your healthcare team.
Ask about perinatal palliative care services.
Connect with a trusted support person or support organization.
When you feel ready, begin learning about the care and support available to your family.
While you do not need to make every decision immediately, some conversations and decisions may become time-sensitive as your pregnancy progresses. Depending on your baby's diagnosis, where you live, and the resources available in your community, certain referrals or options may require additional planning. Ask your healthcare team which next steps are most important now and which can be made over time.
There is no perfect way to navigate this journey. You are responding with love and care in circumstances you never wanted to face.
Continuing a Pregnancy with a Life-Limiting Diagnosis
If you have chosen to continue your pregnancy, this section provides guidance on understanding your baby's diagnosis, preparing for birth, parenting your baby, memory-making, and navigating the days, weeks, and months ahead.
Ending Your Wanted Pregnancy
If you have chosen to end your wanted pregnancy for medical reasons, this section provides information about your options, what to expect, physical recovery, grief, memory-making, and resources to support you throughout your healing journey.
Emotional Support
No matter what path you choose, caring for your emotional well-being is important. This section offers guidance on understanding your emotions, caring for yourself, leaning on others, finding support, and navigating grief throughout your journey.
A Gentle Reminder
Every family's journey is different. There is no "right" way to navigate this experience, and there is no timeline for your grief or healing. Whatever decisions you make are made out of love for your baby.
We hope these resources provide comfort, guidance, and reassurance as you move through this journey. Above all, we want you to know that you are not alone.