The age-old question of whether the grass is truly greener on the other side rings in my mind when I debate whether knowing the fate of our son was beneficial in the long run—or if it would have been easier not knowing at all.

Like most couples, we were overjoyed when we found out we were pregnant. Call it a woman’s intuition, but I just knew before I even took the test. I remember waking up early, taking it, and running back to bed, waiting for the results. I told myself I’d go back to sleep and check it when it was time to get up—but that lasted all of a few seconds. Seeing “pregnant” flash across the test was an out-of-body experience. I was pregnant. I was actually pregnant.

The weeks that followed were pure bliss. I went to my first appointment and was asked if I wanted to do genetic testing—partly due to my age, but also for the opportunity to find out the gender early. I didn’t even consider that anything could go wrong. I was just excited to know the gender in two weeks.

On December 15th, as I sat at the dining table enjoying breakfast with my husband before work, I received a call from my doctor’s office. “My results,” I thought! The nurse identified me and said, “Your results are showing positive for Trisomy 18. This is not a diagnosis. We will schedule you for a maternal-fetal appointment.” And then she ended the call.

Trisomy 18? What is that?

I immediately Googled it. And in that moment, life as I knew it—imagined it, hoped for it—came crashing down.
Nothing would ever be the same.

Trisomy 18, also known as Edwards Syndrome, occurs in 1 out of every 2,000 pregnancies in the U.S. “Trisomy” refers to three copies of a chromosome—in this case, an extra #18 chromosome. My biggest takeaway from being on the receiving end of a diagnosis deemed “not compatible with life” is how quickly many medical professionals offer one solution: termination. When you choose not to terminate, it can feel like you're wasting their time.

We were lucky to have a mostly supportive medical team—compassionate, respectful of our choice to continue the pregnancy. To allow our son to write his own story. To give him a chance. I knew the odds were stacked against us, but all I wanted was the chance to meet him alive. To hold him and feel his warmth. For him to feel my love. To look into his eyes and tell him he was everything I ever wanted and needed. To tell him his mommy and daddy love him so much.

Every appointment was met with bad news. Each scan showed something else: missing both radii, clenched fists, Schizencephaly, Myelomeningocele, IUGR, a stroke, VSD. The list goes on. I choose not to speak on his ailments often. While they defined so much on paper, they didn’t define him. To me, they were just things that happened.

Our team of doctors and nurses was amazing. They explained everything in great detail. They showed me grace when I was falling apart in their offices. They referred to our son by his name. I couldn’t be more grateful for the treatment we received.

My son’s pregnancy was a beautiful experience for me. I never felt more connected to someone I didn’t know. I always felt his presence. I talked to him all day. I’d feel his little bum poking on the side of my belly and rub it. I didn’t want to miss out on any typical experiences. My sister, along with our extended family and friends, hosted a beautiful virtual shower. My husband and I painted his room. We hung decorations. I bought a rocker. I wanted a space we could call his—a place I could go and be with him.

There is something so powerful about the loss community—how they show up for you, support you, and walk with you through your journey. I was told about NILMDTS, and being the planner that I am, I looked up every photographer in my area. I knew I would want photos taken of our son when he was born. Being new to the area, I also wanted a photographer to take our maternity pictures. I reached out to a few through NILMDTS and quickly heard back from Hale.

I feel so blessed and lucky to have crossed paths with her. Hale is one of those rare, remarkable people you meet only a few times in life. You’re left in awe of how genuine and kind she is. She suggested the most magical location for maternity photos. Together with my husband and our 15-year-old dog, we captured as many memories as possible—and my big round belly—from every angle. Carrying our son is truly my greatest memory. I wanted to be able to relive those moments for the rest of my life.

After receiving Oliver’s diagnosis, I began planning everything I could in advance. It gave me a sense of control. I planned his cremation arrangements. I planned his memorial. I planned what he would wear.

Growing up, my mom made many of my sister’s and my special occasion dresses. I knew Oliver would be small, so I wasn’t sure if anything would fit him well. Then I thought—my wedding dress. I immediately began cutting. A bit from each part—the lace, the appliqués, the silk. I sent it all to my mom and told her to do what she did best. Without measurements, she sewed the most beautiful gown and cap for him.

Baby Oliver by NILMDTS Affiliated Photographer Halè Adams

On April 8th, our son’s mighty heart stopped beating, and my labor was induced. Oliver Behr Hartman, our beautiful son, entered the world silently on April 10, 2022. We got to spend 26 beautiful hours with him. We held him. We kissed him. I took mental pictures of every inch of him. I didn’t want to forget a thing. I sang to him. I whispered “I love you” just about every other minute.

I had reached out to Hale before we went to the hospital. She was out of town but said she would try to make it. By the grace of God, she flew back that same day and arrived that evening.

Thinking back, I’m surprised by the feelings I felt introducing my son to Hale. I was proud. In a way, I was excited to show her my son and to have her photograph him. We now have our rainbow baby—and Hale took her newborn pictures too. The feeling was the same: overwhelming pride. That was my boy. My handsome boy.

Baby Oliver by NILMDTS Affiliated Photographer Halè Adams

Hale captured him in his gown, wrapped in the blanket with his name—gifted by a good friend. In his crocheted bonnet, surrounded by all his stuffies from family and friends. My husband Jason and I posed with him—holding him between us, close to our cheeks. My parents got photos with him too.

Opinions are so varied when it comes to photographing someone who has passed. But as his mother, I cherish these photos. I will never dress him for a school picture. He’ll never pose for a baseball team photo or with a prom date. I’ll never share a mother-of-the-groom dance with him. So many missed opportunities. These photos will be all I have—for the rest of my life.

Someday, his sister will ask about him. I will open that album and show her the little boy who came before her. The baby who made me a mother. My sweetest hello and most devastating goodbye.

Oliver’s story and my pregnancy journey can be read on Instagram at @olivers.mission.

Now I Lay Me Down to Sleep, a dedicated 501(c)(3) non-profit, offers families experiencing pregnancy and infant loss with complimentary remembrance portraits, capturing precious moments with their babies. Your generous donation can help us extend this heartfelt service to more families in need. Please consider supporting us here.