Preparing for your baby's birth after receiving a serious or life-limiting diagnosis can bring many questions, emotions, and uncertainties. You may be wondering what labor and delivery will look like, what medical care your baby might need, and how much time you may have together.
For some families, there is uncertainty about whether their baby will die during pregnancy, during labor and delivery, or after birth. Others may be preparing for a baby who will need specialized medical care or ongoing support.
Some parents find comfort in learning about their options and making plans ahead of time. Others may not feel ready to make these decisions, and that is okay.
Your healthcare team, perinatal palliative care team, social worker, or hospital staff can help you understand what to expect and explore the choices available to you. Creating a birth plan can be one way to communicate your preferences, values, and hopes for your baby's birth and care.
Birth Preferences and Medical Decisions
As you prepare for your baby's birth, you may have questions about labor, delivery, and the care your baby will receive. Your healthcare team can help you understand which options are available based on your health, your baby's condition, and the circumstances surrounding the birth.
Some things you may wish to discuss include:
Labor and Delivery
Where you would prefer to give birth and who you would like present
Your preferences for pain management and comfort during labor
Whether vaginal birth or cesarean birth is recommended, and why
How your baby's condition may affect monitoring or medical decisions during labor
What may happen if unexpected complications arise
Your Baby's Medical Care
Whether your baby may need immediate medical attention after birth
What treatments or interventions may be available and their potential benefits and limitations
Whether comfort-focused care or perinatal palliative care is an option
Your preferences for holding your baby, skin-to-skin contact, and remaining together whenever medically possible
How decisions will be made if your baby's condition changes
You may find it helpful to discuss these questions with your obstetric team, neonatologist, and perinatal palliative care team, if available.
A birth plan can help communicate your wishes, but it does not need to include every possible decision. You can revisit your preferences as you receive new information or as circumstances change.
Spending Time With Your Baby
Many families find it helpful to think about how they might want to spend time with their baby after birth. Depending on your baby's condition and medical needs, there may be opportunities to hold, care for, and create memories with your baby.
You may wish to consider:
Holding your baby and having skin-to-skin contact, when possible
Talking, singing, or reading to your baby
Bathing, dressing, or changing your baby's diaper
Taking photographs or videos, including family photographs
Creating keepsakes such as handprints, footprints, or a lock of hair
Inviting siblings, grandparents, or other loved ones to meet your baby
Including meaningful cultural, spiritual, or religious traditions
Spending quiet, private time together as a family
If your baby needs medical care immediately after birth, ask your healthcare team how you can be involved in their care and what opportunities there may be for physical closeness.
Some families choose to make detailed plans for these moments, while others prefer to decide what feels right after their baby is born. You may also change your mind about what you want.
If your baby's life is expected to be brief, your care team can help you explore ways to spend time together and create memories, including options that may be available if your baby dies.
There is no right or wrong way to spend time with your baby. What matters is that you have information, support, and opportunities to make choices that feel meaningful to you.
Who You Would Like to Be Present
Consider whether there are family members, siblings, close friends, spiritual or religious leaders, or others you would like to be present during your baby's birth or spend time with your baby afterward.
You may also prefer to have quiet, private time with your baby or limit visitors. Your preferences may change, and that is okay. Talk with your healthcare team about who can be present and any hospital policies that may affect your plans.
Planning Ahead While Leaving Room for Flexibility
As you continue your pregnancy, you may make decisions over time as you learn more about your baby's diagnosis and consider your family's wishes. You do not need to have every answer today, and your plans may change.
Some arrangements, however, can take time to coordinate. Your healthcare team can help you identify what may be helpful to discuss or arrange before birth.
You may wish to:
Ask which referrals, appointments, or arrangements should be made ahead of time.
Discuss when to connect with a perinatal palliative care team, hospice program, or specialized hospital, if appropriate.
Plan for any specialized medical care your baby may need after birth.
Discuss transportation, accommodations, or other practical needs if you may give birth at a hospital away from home.
Ask who to contact if your baby's condition changes or you have questions before delivery.
Remember that a birth plan is a guide, not a contract. It can help communicate your wishes while leaving room for changes in your baby's condition, your health, or your family's preferences.
If Your Baby Dies
If your baby dies during pregnancy, during birth, or after birth, your healthcare team can help you understand what happens next and what choices may be available.
You may have opportunities to hold, bathe, dress, photograph, and spend time with your baby. Some hospitals have cooling bassinets, such as a CuddleCot, that may allow families additional time together. You can ask about these options before birth or when you feel ready.
You may also have choices regarding burial, cremation, or other arrangements. A hospital social worker, bereavement coordinator, or funeral home can help explain your options, including any requirements that vary depending on where you live.
You do not need to make all of these decisions alone. Your care team can help you understand your options and support you in making choices that feel right for your family.