What A Photo Of My Lost Baby Means To Me

One quick glance at my phone and you’d probably be alarmed at the amount of photos I have stored. Currently, roughly half of the 62,913 pictures were taken in the last 15 months, since the birth of my second son. Some may call me crazy. Some may say that’s it?! And some may never understand the value and meaning behind a photo when it is all that you have.

CW: This article discusses infant loss, and contains an image of a family's late child.

Seven. Seven is the number of photos that I have of my firstborn son. Which seems so surreal when I compare that number to the arguably overwhelming number of photos I snap of my second on a daily basis. But I was so afraid when I found out I was pregnant for the first time, and was completely incapable of understanding how significant photos would be later, or how important it would’ve been to take them when I could... and before I couldn't.

Bennett, my firstborn, was born on Thanksgiving Day, 2010 on a small military base located in Misawa, Japan. The Friday afternoon prior to his arrival, I was diagnosed with intrauterine growth restriction (IUGR) and was cautioned that his birth would most likely result in an extended hospital stay due to his measurements from the ultrasound scan taken earlier that day. It was assumed he would have underdeveloped lungs and need steroids for about a week, but that he should more than likely have an easy hospital stay and be heading home with his parents once that stay was deemed no longer necessary.

My then-partner and I had reservations at the Japanese theater that night to see the newest Harry Potter film. I asked the doctor if I had any reason to worry and he reassured me that all would be fine; that my son was “just going to be a little guy." But when I asked what the worst case scenario could be he said, “Well, he could die, but we aren’t going to even consider that as a scenario that could happen right now. So go out and enjoy your last weekend before you’re bringing a baby home!” I couldn't tell you a single scene from that Harry Potter film.

After a long 32 hours of labor, Bennett was born and quickly taken away to be examined and for the doctors to assess his overall condition. I remember the last push, and the sigh of relief that I wasn’t going to need the C-section if I couldn’t push him out (after already having an episiotomy and vacuum assistance). I remember the sound of his sweet cry. I remember the nurse quickly saying, “Well, his bladder works because he just peed on me!” I remember closing my eyes, feeling relieved that, yes, everything was going to be fine. I remember, for a few moments, not worrying. Then I realized the doctors weren’t letting me hold him and I wasn’t allowed to nurse him because they needed to take him away and get him on oxygen. I remember begging his dad to walk over and take a few pictures so I could at least see what his face looked like. And I remembering hearing seven distinct clicks; seven clicks that would forever symbolize the only pictures that exist of my first child.

The moments following our goodbye felt unfinished and empty. Empty because my arms had never felt the weight of his body. Unfinished because I didn’t get to take a photo with him.

After roughly 30 hours of back and forth between the nurses calling pediatricians and consulting other experts, a team of neonatal intensive care unit (NICU) doctors were flown in from another military base to help transport Bennett. They were unable to give him the care that he needed at the small military base were he was born. I was discharged, told to go home, grab enough clothes for a few weeks, and to snag our passports because they weren't sure where we were going to end up. By the time we arrived back at the hospital, we were told that Bennett’s condition had grown severe to the point where he wasn’t stable enough to transport. Two hours after the NICU team finally arrived, and 30 hours after his birth, I was told I needed to finally come into the room where they were caring for my son.

I begged the doctors not to make me go. I told them I didn’t want to see him like that; with tubes and other medical equipment attached to his tiny body. But I was urged, heavily, to go and see him.

And that’s when I knew I would be experiencing the last and final moments I would ever see my son.

The moments following our goodbye felt unfinished and empty. Empty because my arms had never felt the weight of his body. Unfinished because I didn’t get to take a photo with him. I didn’t get to put him in the coming home outfit I had special ordered off Etsy. I didn’t get to wrap him in the blanket my mom had crocheted for him. So much love felt lost immediately as he took his last breath. So much sadness and sorrow surrounded us. It was his nurse, Vivian, who came in after things had settled down and asked if we, my then-partner and I, wanted to hold him. The thought of holding my dead son for the first time made me feel sick. I felt as though it was something I shouldn’t be allowed to do. How could I hold him after he had died? Why would I do that? What would people think of me?

Now, years later, I wish, almost every single day, that I would have known then what I know now.

I am forever grateful for the best friend who sat next to me and physically forced me to hold my son. She reminded me, ever so harshly, that there would never be a chance to hold him again. So I did. I did and I felt the leer of everyone in that horrid room. I felt shame. I felt judgment. I felt like every person in that room would forever have this negative image ingrained in their minds: me, holding a dead baby. I felt so much guilt for that feeling, but I quickly asked them to take him away because I just couldn’t handle the judgment and the pressure I felt.

Now, years later, I wish, almost every single day, that I would have known then what I know now. I wish I wouldn't have allowed the judgement of others to rob me of the time I was given with my sweet son, Bennett. I wish, every day and more than anything, that I knew the moments with my son weren't for anyone else to judge. The judgment and shame I felt, unnecessarily, robbed me of my opportunity to bond with my firstborn and mother him in the very few moments I had been given. The reality is that, to this day, I only remain in contact with two people who were in that room with me: my best friend and Bennett’s nurse, Vivian. The people I felt were going to judge me and look at me differently are people that aren’t even a part of my life now, so what they thought of me holding my son in that moment was, in hindsight, completely irrelevant.

The weeks following Bennett’s death I scoured the internet for any and all support I could potentially find. I wanted to know what other mom’s were going through and how people survived what had happened to them after losing a child. I found Facebook groups, I found message boards on the pregnancy website I frequented, and I found a small tribe of women who understood most of what I was feeling.

I also found an organization called Now I Lay Me Down to Sleep. They're a nonprofit organization focused on introducing remembrance photography to parents suffering the loss of a baby, and with a free gift of professional portraiture. Photographers volunteer their time to go into the hospitals to capture the only moments parents spend with their babies. They take exactly what I was afraid of: a picture of a mother holding her deceased child. The photographers create an intimate portrait session, and encourage creating a bond between the parents and the baby by capturing parents holding their baby, kissing the baby's cheek, and holding the baby's hand.

They help parents know that regardless of how our culture handles death, especially the death of infants, it is, in fact, perfectly acceptable to hold and love their baby, whether the baby is still alive or has already passed away.

The grief was there, even as I held a living and heart-healthy little boy, and I could feel my mind start to turn that grief into action.

I was extremely envious of the people I found; the people who had pictures with their children who had died. I also wondered why it wasn’t something I hadn’t realized was perfectly OK to do. Why did these other families have something I desperately longed for? Why did I stop myself from having what other families get to cherish? Why did I do this to myself?

What I have come to know was that my story isn’t abnormal, and even today I still come across loss families who feel exactly as I felt after my Bennett died: afraid of the judgment; afraid of what these images hanging on the walls of their homes and on their social media feeds would look like; afraid of how people with children who are alive would react.

Last year I gave birth to my rainbow baby: a baby born after a miscarriage, stillbirth, or infant death. And after his birth I found myself looking through the photos that I had taken on the first day of his life — 263 of them — and wishing more than anything that I had even a few more of my first boy. And on the tail-end of that wish came a longing to do more and give others what I didn’t have all. The grief was there, even as I held a living and heart-healthy little boy, and I could feel my mind start to turn that grief into action.

Before my second son was born I connected with a staff member of Now I Lay Me Down to Sleep, who happened to be part of my community's local volunteer team. During a midnight nursing scroll session I stumbled upon her page again, and realized that it was my time to be a part of helping families and helping them understand the value of the photos that they will never have. I reached out and found there were opportunities to volunteer without being a photographer. I could dispatch calls. I could help train hospitals. I could be a part of what they were doing: a mission that was now part of my parenting journey.

Because the memories of those babies will forever live on, and having a picture to look back on is more powerful than you could possibly imagine.

Within weeks I was a part of our local volunteer network. It has been just over one year now and the amount of families that I have been able help gift what I didn’t have is far more than I ever imagined it would be. I get to advocate for them. I get to educate their friends and family who call and ask questions. I get to make sure that they get the opportunity to say yes. I get to be a member of a truly beautiful and special group of volunteers.

I wish, more than anything, that someone would’ve grabbed my face, held it still as I cried, and just said, “You can do this. You want to do this. You want to hold your baby. You want these pictures because there will never be the opportunity to go back and do this ever again. Your story will move people more than you’ll ever realize, and they will cherish the memory of Bennett. Just like you will.”

So please, friends, when you see pictures of families holding their children who have died, tell them how beautiful they are. Tell them how great it is that they are sharing the memory and priceless photos of their beautiful and perfect babies. Because the memories of those babies will forever live on, and having a picture to look back on is more powerful than you could possibly imagine.

Now I Lay Me Down to Sleep (NILMDTS) is an international organization and needs volunteers and supporters. To learn more please go to: https://www.nowilaymedowntosleep.org.