If it becomes clear that your baby's NICU journey seems to be turning away from home, you will need to make decisions about how you and your baby will spend your remaining time together. Tell your medical team what you want. You can ask to hold and caress your little one free of tubes and lines. You may want his or her last minutes or hours to be spent peacefully in your arms. You may want to hold your baby skin-to-skin or at your breast. You may want other family members or friends to be with you in your baby's last moments.
These desires to protect and be close to your baby reflect your profound relationship with this child. Remember that, always and forever, you will hold this baby in your heart.
The medical staff and social workers can help you plan for your baby's death and make funeral preparations. Ask for support and assistance with coping with your grief. Remember that always and forever, you will hold this baby in your heart.
Join the discussion group "Families Who Have Lost a Baby" in the March of Dimes online community Share Your Story®.
More online resources from the March of Dimes
The March of Dimes Web site has more specific information on how to cope with this painful time.
The March of Dimes has a limited number of bereavement materials available at no charge for parents or other family members in the United States who have experienced the loss of a baby between conception and the first month of life. The materials include information available on the March of Dimes Web site, plus additional resources. They are available in English and Spanish. Order our resources for grieving families, including the booklet From Hurt to Healing.
Books and resources on coping with loss for all ages
The Compassionate Friends
Bereavement support group and counseling for families who have lost a child. Local chapters, (877) 969-0010.
Lost Lullaby, by Deborah Golden Alecson (University of California Press, 1995)
Loving and Letting Go: For Bereaved Parents Who Turned Away from Aggressive Medical Intervention for Their Critically Ill Newborn, by Deborah L. Davis (Centering, 1993)
Support and resources for those who have lost a twin and for their families. (888) 205-8962.
When your baby dies at or after birth
The death of a baby is one of the most painful things that can happen to a family. It’s so unfair. Babies aren’t supposed to die. They are the beginning of life, not the end. It’s not what you planned or expected.
In the United States, birth defects, premature birth/low birthweight and sudden infant death syndrome (SIDS) are leading causes of babies in the first year of life. Experts are studying why these things happen and how to prevent them.
Give yourself plenty of time to grieve and heal. You may never really get over your baby’s death. But you can move through your grief to healing. As time passes, your pain eases. You can make a place in your heart and mind for the memories of your baby.
You may find that talking about your feelings helps you deal with your grief. Visit shareyourstory.org, our online community where families who have lost a baby can talk to and comfort each other. Sharing your baby’s story may ease your pain and help you heal.
You probably already have baby things at home, like clothes, blankets, toys and furniture. Leave them where they are until you're ready to put them away. There's no timeline. You can put them away in a few days, in a few weeks, in a few months - whenever you’re ready.
The death of a baby can be overwhelming. You may find it helpful to talk to someone about your feelings. Tell your partner how you feel. You may find comfort in knowing you’re healing together, even if you’re at different stages of grief. You also can turn to friends or family. They can offer a helping hand while you’re grieving or just be there to listen.
Reach out to your religious or spiritual leader. Your spiritual beliefs may be a comfort to you during this time. Go to your place of worship, such as a church, synagogue or mosque. Even your funeral home may offer support services for grieving families.
Join a support group. A support group is a group of people who have the same kind of concerns. Ask your provider to help you find a support group in your area. Or visit Share Your Story, an online community that includes families who’ve experience the loss of a baby.
If you think you may have depression, talk to your health care provider. Your provider can help treat your depression.