Leaning on Others
You do not have to carry this journey alone. Although it may feel difficult to ask for help, leaning on others can provide comfort, reassurance, and a sense of connection during an incredibly challenging time. Support can come from many different places, and it is okay if your support system looks different from someone else's.
Whether you find strength in your partner, family, friends, a support group, or your faith community, allowing others to walk alongside you can help ease the weight of this experience.
Supporting Your Relationships
A life-limiting or fatal diagnosis affects the entire family. While you and your loved ones may be experiencing the same loss, each person may respond in their own way. Some people express their emotions openly, while others cope quietly or focus on practical tasks. These differences do not mean that one person's grief is greater than another's.
Open and honest communication can help you better understand one another's needs. Give yourself and those around you permission to grieve differently, ask for support, and extend grace during difficult moments. Remember that there is no "right" way to cope, and it is okay if your needs change over time.
If you have other children, consider including them in age-appropriate conversations and opportunities to remember their sibling. Allow them to ask questions, express their emotions, and participate in ways that feel meaningful to your family.
Supporting Siblings
A life-limiting or fatal diagnosis affects the entire family, including siblings. Children may not always have the words to express what they are feeling, and their understanding of the situation will vary depending on their age, developmental stage, and previous experiences with loss.
Whenever possible, include siblings in age-appropriate conversations about their baby brother or sister. Encourage them to ask questions, express their feelings, and share their thoughts openly. Honest, simple explanations can help children feel included and reduce confusion or fear.
Many families also find comfort in involving siblings in meaningful ways throughout the journey. This may include talking or reading to the baby, creating artwork, choosing a special outfit or toy, participating in memory-making activities, attending memorial services, or helping honor their sibling through family traditions. These experiences can help siblings feel connected and reinforce that they are an important part of the family's story.
Every child grieves differently. Some children may ask many questions, while others may become quiet, act out, or return to earlier behaviors. These responses are common and may change over time. Continue to check in with your child, offer reassurance, and remind them that they are loved, supported, and that their feelings matter.
If you are concerned about how your child is coping, consider speaking with your healthcare provider, a child life specialist, school counselor, or mental health professional with experience supporting children through grief.
Navigating Conversations With Others
Sharing your baby's diagnosis or your family's decisions can feel overwhelming. You story is sacred, and you have the right to decide when, how, and with whom you share your story. Setting boundaries, declining conversations, or asking someone else to communicate updates on your behalf are all acceptable ways to protect your emotional well-being.
Depending on your situation, there are many reasons why you cannot share the entirety of your story. For those that can safely share, you may find comfort in talking openly about your experience, or you may prefer to keep it private. There may be certain people who know the whole story, while others may know only parts.
Not everyone will know what to say, and some comments—although well-intentioned—may feel hurtful or dismissive. You are not responsible for managing other people's emotions or expectations.
Finding Your Community
Many families describe feeling isolated after receiving their baby's diagnosis. Connecting with others who have experienced a similar journey can provide comfort, validation, and hope in ways that family and friends may not always be able to.
Support may come in many forms, including pregnancy and infant loss organizations, support groups, mental health professionals, bereavement doulas, faith communities, or trusted friends and family members. It may take time to find the support that feels right for you, and that is okay.
You do not have to navigate this journey alone. Reaching out for support is not a sign of weakness—it is an act of caring for yourself and honoring your baby's story.
