What I Wish You Knew About Infant Loss

So much of grief after pregnancy or infant loss involves being misunderstood. We recently asked our Joyful Mourning Community to share with us what they wish that others – friends, family, the medical community, etc. – understood about pregnancy or infant loss. Here are their responses. And PS: If you want to know more about how to love a friend grieving a pregnancy loss in the 1st trimester, click here & download a free guide, just for you. Thank you for loving the grieving mom in your life!

About Infant Loss:

Every story and every loss is unique. Not all aspects of infant loss are listed here. But these are a good starting point if you want to understand more.

Neonatal loss is a loss that occurs in the first 28 days after a baby is born..
The five leading causes of death for infant loss in recent years have been: birth defects, preterm birth and low birth weight, sudden infant death syndrome (SIDS), injuries, and maternal pregnancy complications.
Infant loss is typically considered the loss of a baby from birth through approximately 1 year.

We asked:

What do you wish other people understood about losing an infant?

They answered:

“I wish others understood that we had the chance to see our baby alive and interact with her. I wish they understood the trauma that accompanies the time in NICU, the medical decisions, traveling back and forth from the hospital, the waiting and not being able to fully provide care for your baby while still recovering. I wish people knew that I missed her first cry, her first diaper change and that the only time I was able to see my baby dressed without cables and machines beeping, she was already gone.I wish others also understood that postpartum is especially hard for loss moms” - F.

“I wish others understood that when I see my family, I still "see" him as part of it. Not physically/visually of course, but in my heart, I know that I have 3 children. Even if everyone else only sees 2.” - M.

“I wish people understood her impact on our family--my daughters still remember her and talk about her--and that is ok and good, not unhealthy. I wish people did not try to compare the loss of a six month old to anything other than what it is.”- R.

“I wish others understood that my grief is an expression of my love for my baby, so I will be grieving forever. And not only am I grieving not having her here in my arms anymore but I’m grieving all the secondary losses as well. Grieving not being able to see her take her first steps, hear her first words, first day of school, braid her hair, ride a bike, etc etc forever and ever. Pictures are really hard... And that’s all on top of just trying to figure out how to live without her. Time is a double edged sword. I get farther and closer to her all at once. Nothing will ever be perfect, nothing will ever feel whole, I will not be complete on this side because she is not here with me. I wish others knew that I continue on not for me, but for her. That until I am with her again I will continue to love and honor and remember her every moment of every day. “ - E.

“I wish they knew that the loss is still part of my life and always will be. That it’s not just something that happened to me and is now over. I continue to feel like I lose her through things we didn’t get to do with her and I see it in so many daily things, big and small.” - A.

“I wish people knew that he was real. He was and is my son. I never for a second thought he’d live anywhere but with me. I still haven’t emptied his changing table a year later. All that to say, I’m still fragile. My house still feels foreign and triggering. I am putting one foot in front of the other, but I still need to hear his name, feel the comfort of a loved one who is compassionate. I’m not ready to “move on”. A part of me is gone and that isn’t a swift healing process.” - R.

“My son was not some sad thing that happened at this one point in my life. He’s a part of my soul, my world, our family. We loved and kissed and dreamed for him. And still long for him. I wish people knew how deep that grief is, like an amputation, and how hard learning how to live without a literal part of you is.” - R.

“I wish they knew she's my daughter, not in theory but in real life. She's my kids' sister. She's a part of our family. I imagined life with her. Everything I do I am missing her. I wish they knew that they won't make me sad by bringing it up, I'm already sad but I am more sad if I think people forgot or don't care. “ - J.

“That I’m still grieving and broken even on days I’m laughing and smiling. That sometimes telling me, “Better things will come,” or “God has a plan,” doesn’t make this hurt any less.” - V.