Honoring Infant Loss Awareness Month in October

“You made the worst day of our lives more bearable.”

Every time I read the card and this message, I remember all the details. I remember the story. I remember the family. I remember singing to the baby as his dad and I bathed him and created a mold of his foot, saying a little prayer in my head that all the little creases in his foot would forever be captured in clay for his parents and siblings to remember. I am passionate about providing care to families experiencing perinatal loss (which can include miscarriage, ectopic pregnancy, pregnancy loss, neonatal demise, stillbirth, SIDS, and infant death). October is Pregnancy and Infant Loss Awareness Month and every October I think of the stories I have been part of while honoring the families that have experienced perinatal loss.

Working in healthcare is hard, but I wouldn’t change my profession; I love caring for people.  Working in any subspecialty of women’s health, whether it is labor and delivery, NICU, outpatient clinic, fertility, or anywhere in between, there is sorrow experienced alongside the joy. Being a fellow healthcare provider, you know exactly how difficult it can be to put a smile on your face while helping a family welcome a baby into the world while right next door you just helped a family make mementos as they are unexpectedly not taking their baby home with them.

How do you feel about providing bereavement support? There’s no right or wrong answer here, but just a question to get you thinking. I feel drawn to caring and supporting families, but I didn’t always feel this way. Depending on the unit you work, you may not see perinatal loss patients frequently, which can contribute to feelings of being unprepared or unequipped (Heustis & Jenkins, 2005).

I did not feel fully prepared for the first time I cared for parents experiencing a stillbirth. I started out as a new nurse on an Labor/Delivery/Recovery/Postpartum (LDRP) unit and during my orientation there wasn’t much focus on perinatal bereavement care. I remember feeling scared the first time I cared for the family experiencing perinatal loss and felt a calling to work with families and do better because, in that moment, I felt like I had failed them. I didn’t know what to say, so I said nothing. I didn’t know what to do, so I only went in the room when necessary.

I have grown from this experience. I sought education for myself, taking a 2 day course on perinatal bereavement care. I also became certified in Perinatal Loss Care and as a Still Birth Doula; both helping me to be more comfortable in the care I provide. There’s many places you can turn to for resources. Pregnancy Loss and Infant Death Alliance (PLIDA) is a professional membership organization for healthcare practitioners, developing evidence-based information, position statements, and practice guidelines.

The Importance of Memory Making

Think about the practices you currently have in your work area. It’s important to think about memory making after a baby dies. Here are some things to think about including as keepsakes for families (Heustis & Jenkins, 2005):

• Footprints
• Measuring tape
• Crib card with height and weight
• Lock of hair (with family permission, as some cultures don’t permit hair to be cut)
• ID bracelet
• Digital and printed photos (with family permission)
• Hand and/or foot molds
• Baby ring

In addition to thinking about keepsakes, it’s also important to think about parents and families and involving them in the memory making process. Parents should also be discharged with books, printed materials, and other resources to help them cope with perinatal loss. Many organizations, both local and national, are available with support groups and information online or with printed materials; it’s always great to know what is available close to you for these families.

It’s also important to remember that each family is different in their needs and, while many of the keepsakes may be the same, you have to be flexible in tailoring the support provided based on each family. During COVID, we needed to be creative in order to help make memories. Siblings and family visitation were limited due to the pandemic. I will never forget one family with many children. They were about to lose their baby, but their children hadn’t met their new sibling. With special permission, we created an afternoon of memory making. I painted a family tree, we added fingerprints of everyone, and then added the baby’s handprints to it. We also made the siblings t-shirts with the baby’s footprints on them, and made memory books, read stories, and took family photos. Days and opportunities like this are why I am passionate about bereavement care.

Infant Loss Awareness and Facing Lactation After Loss

Some mother choose to pump and donate their breast milk after experiencing perinatal loss.  Each situation should be treated uniquely. Never assume you know what is best; instead, have a conversation and let the parents decide what is best for them and their unique situation. Some women are surprised to know that they will experience engorgement and breast changes in the days to come after loss. Star Legacy Foundation is a great resource for families and healthcare providers. There is information about lactation after loss, donating breast milk, and stopping lactation.

On October 15^th, I encourage you to participate in the International Wave of Light, honoring babies gone too soon, by lighting a candle at 7 P.M. Thank you for all you do! Remember, every family has a story. You help to write them.

References

• Heustis, J., Jenkins, M., & Wolfelt, A. D. (2005). Companioning at a time of perinatal loss: A guide for nurses, physicians, social workers, chaplains and other bedside caregivers. Companion Press.