Our first ultrasound appointment was eagerly anticipated as we could not wait to see images and learn the gender of our first child. Instead we left the hospital on that afternoon in the fall of 2010 with devastation and tears. While we could detect a tiny heartbeat in our baby girl, at 20 weeks along, her measurements, proportions, and lack of movement were just a few of the signs that things were not quite right. We learned through screening that she appeared to have a chromosome disorder that was deemed incompatible with life.
In our search to understand more about this potentially fatal diagnosis, my wife came across Now I Lay Me Down to Sleep and reached out to one of their volunteer photographers, Vicki Zoller, a skilled photographer but more importantly a compassionate and joyful woman. Vicki assured us that when the time came of Evelyn’s arrival, she would be there.
Over the months that followed, we held onto hope and prayed for a miracle. Little by little, our baby girl was growing at each ultrasound, albeit at her own pace. Alison was about 36 weeks along when we went in for a checkup to find the baby’s vital signs concerning. To our surprise, the doctor informed us that we wouldn’t be leaving the hospital until our daughter was born, and we checked into the labor and delivery unit. We called our family, our pastor, and Vicki. Evelyn Grace Mandi was born via cesarean section early the next day on February 28, 2011, weighing just 2 pounds. Yet despite her tiny figure, she was breathing on her own and mostly stable. Our hopes had lifted and she was sent to the NICU. A couple of hours later, Vicki showed up at the hospital to take pictures of the newest member of our family!
The next morning, we received results of more comprehensive testing. That is when our hopes were dashed again and reality hit hard. The head pediatrician explained that Evelyn was diagnosed with triploidy, a fatal condition where she carried a complete extra set of chromosomes. Upon learning that she could pass away at any moment, we decided to have Evelyn discharged from the NICU to stay with us in Alison’s postpartum recovery room so we could take in every moment we had. We updated Vicki, and she was generous enough to return and take photos of Evelyn without the cords, oxygen, and limitations of the NICU.
Evelyn was a fighter, and we were able to enjoy 2 more days together as a family before she passed away in our arms on March 3rd, 2011. In between visits with extended family and friends, we walked with her through the hospital hallways, snuggled next to her in bed, and listened carefully to the small noises she made. As a father and photographer, you hope to capture the milestones of your daughter growing up, taking first steps, going to school, playing sports, or dancing at her wedding. It breaks my heart that we couldn’t experience those things here on earth together. To have the beautiful images of Evelyn’s short life that Vicki captured meant everything.
In January of this year, as Evelyn’s 10th birthday was approaching, I wondered how I might be able to honor her life. Alison and I have grown our family with the addition of three boys (Nathan (8), Tyler (6), and Zach (4)) since Evelyn’s passing. Along the way, my passion for photography was rekindled as I wanted to take an endless number of photos of my precious kids. I asked Alison about applying to be a photographer with NILMDTS and she encouraged me to do so. However, I was nervous because I read the selection criteria and I didn’t think my current work was ready. Plus, I figured NILMDTS had enough photographers so I wouldn’t be needed. Alison continued to encourage me to apply and I finally did. To my delight, my application was accepted! Additionally, I applied to be a digital retouch artist since covid restrictions seemed to limit photo opportunities and I was eager to help in any way I could.
Photograph courtesy of Mark Mandi
Although it’s still early, volunteering for NILMDTS has been amazing. There is no denying the difficulty of walking into a hospital room or editing a session when you know these are some of the hardest moments of these peoples’ lives. My heart breaks for the families because I know how difficult it is to lose your child. However, knowing how much Vicki’s photos of Evelyn mean to my family motivates me to serve others to the best of my abilities. I hope that the gift we offer at NILMDTS will allow families to grieve, heal, then celebrate the life of their little ones just like it has for us.
