Continuing A Pregnancy With A Life-Limiting Or Fatal Diagnosis

parents
Written By Kiley Hanish
 

You are not alone.

There is specialized care available for you and your baby.

Guiding You Through Your Baby’s Life, Birth, And Death

Receiving a life-limiting or fatal diagnosis often places families in a difficult space between the diagnosis and the expected outcome. During this time, many parents find themselves searching for information, support, and guidance while trying to make the most of the time they have with their baby.

At RTZ HOPE, we hope to provide practical information and compassionate support as you navigate your baby's life, birth, death, and the months that follow.

Understanding Your Baby’s Diagnosis

Receiving a life-limiting or fatal diagnosis for your baby can feel overwhelming. Many parents describe feeling shocked, confused, numb, or unable to process all the information they receive during appointments.

It is important to know that you do not need to understand everything right away. It is okay to ask questions multiple times, request written information, or seek additional support as you learn more about your baby's condition.

Every diagnosis is unique, and every baby will have their own journey. Understanding your baby's diagnosis may help you make informed decisions, prepare for birth, and identify ways to spend meaningful time together.

    • What does this diagnosis mean for my baby?

    • What might my baby experience during pregnancy?

    • What should I expect during labor and birth?

    • How long might my baby live after birth?

    • Will my baby be in pain or discomfort?

    • What comfort measures are available?

    • What treatment options are available?

    • What support services can help my family?

    • Are there resources I can take home and review later?

  • If you feel uncertain, it is okay to:

    • Request a second opinion

    • Ask for additional appointments to discuss the diagnosis

    • Meet with a genetic counselor, specialist, or perinatal palliative care team

    • Bring a support person to appointments

    • Take notes or ask permission to record information for later review

  • You are not expected to become a medical expert overnight. Many parents leave appointments feeling overwhelmed, with unanswered questions or realizing later that they forgot to ask something. It is okay to contact your healthcare team, ask for clarification, and revisit conversations as new questions arise.

    Some families find comfort in learning as much as possible about the diagnosis, while others prefer to take in information one step at a time. There is no right or wrong approach. While understanding your baby's diagnosis can help you prepare for the days ahead, your baby's diagnosis does not define who they are.

    As you learn more about your baby's condition, remember to make space for moments of connection, memory-making, and simply being together as a family.

Parenting During Pregnancy

Many parents share that they did not realize they could begin parenting their baby long before birth. Receiving a life-limiting or fatal diagnosis does not change the fact that you are your baby's parent.

Parenting during pregnancy may look different for every family. Some parents find comfort in creating memories, celebrating milestones, or simply spending intentional time with their baby. There is no right or wrong way to parent your baby. What matters most is finding what feels meaningful to you and your family.

  • You may wish to:

    • Talk, sing, or read to your baby

    • Name your baby and use their name when speaking about them

    • Take maternity photographs to document this chapter of your journey together

    • Keep a journal, write letters, or create a memory book for your baby

    • Celebrate milestones such as feeling kicks, learning their gender, holidays, or special family gatherings

    • Include siblings, grandparents, and loved ones in meaningful moments and memories

    • Plan a special outing, trip, or experience that allows you to create memories together

    • Ask for ultrasound photos or recordings of your baby's heartbeat if available

    • Create personal, cultural, spiritual, or family rituals that honor your baby's life

    • Imagine meeting your baby and focus on the life you share together, no matter how brief

  • Caring for yourself is also a way of caring for your baby. Consider:

    • Eating nourishing foods that support your health during pregnancy.

    • Engaging in gentle movement as approved by your healthcare team.

    • Prioritizing rest and self-care when possible.

    • Accepting support from family, friends, and loved ones.

    There is no perfect way to parent during this experience. The moments you spend loving, protecting, celebrating, and thinking about your baby are all part of your parenting journey. Whether you choose grand gestures or quiet moments of connection, your love for your baby matters.

Planning For Birth

As you prepare for your baby's birth, you may find yourself facing many decisions and emotions. Some families want to plan every detail, while others prefer to take things one step at a time. There is no right or wrong approach.

Creating a birth plan can help you communicate your wishes with your healthcare team and ensure that your values, goals, and hopes for your baby's life are understood.

THINGS TO CONSIDER

    • What birth options are available to you?

    • Where would you like to give birth?

    • Who would you like present during labor and delivery?

    • What comfort measures or pain management options are important to you?

    • Would you like uninterrupted time with your baby after birth?

    • Who would you like to meet your baby?

    • Are there special traditions, prayers, blessings, or ceremonies you would like included?

    • Would you like photographs, handprints, footprints, or other keepsakes?

    • What interventions, if any, would you like for your baby?

    • What comfort measures are available?

    • Have you discussed your goals of care with your healthcare team?

  • Many parents find comfort in having a birth plan, but it is important to remember that plans may change based on your baby's needs or medical circumstances. A birth plan is not about getting everything perfect—it is about helping your healthcare team understand what matters most to you and your family.

    You do not need to make every decision today. Many families find it helpful to revisit their plans as they learn more about their baby's diagnosis and as their needs evolve throughout the pregnancy.

Expecting the Expected and Unexpected

One of the most challenging aspects of this journey is living with uncertainty. While your healthcare team can help you understand what is most likely to happen, no one can predict exactly how your baby's story will unfold.

Many families describe preparing for one outcome and experiencing something entirely different. Some babies pass away before birth, some during labor, and others live for minutes, hours, days, or even longer than expected. This uncertainty can feel overwhelming, but it is also a reminder that every baby's journey is unique.

  • You may expect:

    • Frequent medical appointments and discussions about your baby's condition

    • Changes to your plans as new information becomes available

    • Difficult decisions regarding your baby's care and birth

    • A wide range of emotions, including hope, grief, fear, love, and uncertainty

    • The need to revisit decisions throughout your pregnancy

  • Many families share that they were surprised by:

    • How much joy, love, and connection they experienced during pregnancy

    • How meaningful it felt to spend time parenting their baby before birth

    • Their baby's condition changing over time

    • Their baby living longer or shorter than anticipated

    • The strength they found in themselves, their family, and their support system

    • How deeply they treasured ordinary moments together

  • You do not need to have every answer or every plan figured out. It is okay to hope, grieve, celebrate, and prepare all at the same time.

    Many parents find that they are constantly balancing what they have been told to expect with what is actually happening. Both realities can exist together.

    Preparing for different possibilities is not giving up hope. It is simply making room for whatever path your baby's journey may take.

Meeting and Caring for Your Baby

Many parents worry that they won't know what to do when they finally meet their baby. It is important to remember that there is no right or wrong way to spend this time. Whether your baby lives for minutes, hours, days, or longer, your presence and love are enough.

  • You may choose to:

    • Hold your baby skin-to-skin

    • Introduce your baby to family members and loved ones

    • Read stories, sing songs, or talk to your baby

    • Celebrate your baby's birth with prayers, blessings, or cultural traditions

    • Take photographs and videos

    • Spend quiet time together as a family

  • Depending on your baby's condition, you may be able to:

    • Hold and comfort your baby

    • Feed your baby if appropriate

    • Bathe, dress, or swaddle your baby

    • Participate in your baby's daily care

    • Create a calm and comforting environment

    Your healthcare team can help guide you through what is possible based on your baby's individual needs.

  • Some families are surprised to learn that their baby may live longer than anticipated. While this can bring uncertainty, it may also provide additional opportunities to bond, parent, and create memories together.

    If this occurs, your care team can help you understand available resources, support services, and care options.

Memory-Making and Honoring Your Baby

Many families find comfort in creating memories and honoring their baby's life in ways that feel meaningful to them. While some families appreciate traditional keepsakes, others find comfort through personal rituals, cultural traditions, creative projects, or acts of remembrance.

There is no right or wrong way to honor your baby. What feels meaningful to one family may look different for another.

  • Whether your baby is alive for moments, days, or longer, you may wish to create memories together by:

    • Taking photographs or videos

    • Requesting handprints, footprints, molds, or heartbeat recordings if available

    • Saving meaningful items such as blankets, clothing, hospital bracelets, ultrasound images, or cards

    • Reading stories, singing songs, or playing meaningful music

    • Celebrating your baby's birth with loved ones

    • Incorporating cultural, spiritual, or religious traditions that are important to your family

  • Many families continue to honor their baby long after birth through:

    • Naming their baby and speaking their name

    • Writing letters or keeping a journal

    • Creating a memory box or scrapbook

    • Planting a tree, flowers, or a memorial garden

    • Lighting a candle on special dates

    • Wearing jewelry or carrying keepsakes that help them feel connected

    • Making donations or participating in charitable acts in their baby's honor

    • Participating in remembrance events or awareness activities

  • Partners, siblings, grandparents, and other loved ones may also benefit from opportunities to create memories and honor your baby's life. Consider inviting them to participate in photographs, celebrations, rituals, or remembrance activities if it feels right for your family.

  • The goal is not to create every possible keepsake or memory. Some families treasure photographs and mementos, while others find comfort in traditions, stories, or quiet moments of reflection. There is no perfect way to honor your baby—only the way that feels most meaningful to you and your family.

Common Responses After Loss

The death of a baby can affect every part of your life—emotionally, physically, socially, and spiritually. Grief is a natural response to loss, but there is no "right" way to grieve.

You may experience a wide range of emotions and physical changes in the days, weeks, and months following your baby's death. Some days may feel manageable, while others may feel overwhelming. Both experiences are normal.

  • You may experience:

    • Sadness, anxiety, anger, or irritability

    • Feelings of guilt, self-blame, or regret

    • Difficulty concentrating or making decisions

    • Memory changes or feeling mentally "foggy"

    • Recurring thoughts about your baby

    • Flashbacks to the diagnosis, labor, birth, or death

    • Feeling disconnected, numb, or overwhelmed

    • Increased anxiety around healthcare settings or future pregnancies

    • Feelings of loneliness or isolation

  • You may experience:

    • Fatigue or low energy

    • Difficulty sleeping

    • Changes in appetite

    • Headaches, muscle tension, or body aches

    • Racing heart or feelings of anxiety

    • Postpartum bleeding and cramping

    • Breast tenderness, engorgement, or milk production

    • Changes in daily routines and motivation

  • Grief does not follow a timeline and may not look the same from one person to another. Partners, siblings, grandparents, and other loved ones may grieve differently. Differences in grieving styles do not mean that one person's grief is greater or lesser than another's.

    Remember whatever you are feeling is valid. You do not need to grieve in a certain way or on a certain timeline. Give yourself permission to experience your grief as it comes and seek support when you need it.

The Days, Weeks, and Months Ahead

The days, weeks, and months following your baby's death can feel overwhelming and uncertain. Many families describe feeling supported during pregnancy and birth, only to find themselves unsure of what comes next once they leave the hospital.

Grief does not have a timeline, and there is no "right" way to move forward. As you navigate life after loss, you may find that some days feel manageable while others feel unexpectedly difficult. Both experiences are normal.

  • In the midst of grief, it can be easy to overlook your own needs. Consider:

    • Prioritizing rest and physical recovery

    • Accepting help from family, friends, and loved ones

    • Focusing on basic needs such as eating, drinking water, and sleeping

    • Giving yourself permission to step back from responsibilities when needed

    • Practicing self-compassion during difficult moments

  • Partners, family members, and loved ones may grieve differently. While you are experiencing the same loss, your ways of coping may not always look the same.

    • Communicate openly about your needs and feelings

    • Create space for different grieving styles

    • Include your partner or support person in appointments and decisions whenever possible

    • Remember that there is no "correct" way to grieve

  • Sharing your story can feel exhausting, especially when you are grieving.

    • You do not owe anyone an explanation of your experience

    • You can choose what information you share and with whom

    • It is okay to set boundaries around conversations that feel overwhelming

    • Written updates, emails, texts, or social media posts may feel easier than repeated conversations

    • Remember that other people's reactions often reflect their own discomfort or lack of understanding

  • You do not have to navigate this journey alone.

    Support may come from:

    • Bereavement support groups

    • Mental health professionals

    • Spiritual or religious leaders

    • Pregnancy and infant loss organizations

    • Trusted family members and friends

    Many families find comfort in connecting with others who have experienced a similar loss.

  • Birthdays, due dates, anniversaries, holidays, and other meaningful dates may bring renewed feelings of grief.

    Some families find comfort in:

    • Creating traditions to honor their baby

    • Spending time with loved ones

    • Participating in remembrance activities

    • Taking time for quiet reflection


Sharing Your Story

There is no right or wrong time to share your story. You can choose when, how, and with whom you share your experience. Some parents find comfort in talking openly, while others prefer to share only with a small circle of trusted people. Your story belongs to you.

Grief is not something you need to "get over." The love you have for your baby will always be part of your story. As time passes, you may find new ways to honor your baby, stay connected to their memory, and carry them with you into the future.

No matter where you are in your journey, you are not alone.

 

Resources and support

Kiley Hanish
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