Lori’s Story


We spent three years trying for our miracle girl. She finally arrived in October 2017. Sadly, she wasn’t meant to live long in this lifetime and went back to the spirit world 22 days later.

Diagnosis day is the darkest day of my life. At 28 weeks pregnant, we found out via amniocentesis that Eva had an unbalanced translocation of chromosomes 1 and 17. The doctors had figured it was genetic because there were so many anomalies present on her ultrasounds. Oh, how I prayed they were wrong. The deletion on chromosome 17 caused Miller-Dieker Syndrome, a rare chromosomal abnormality that comes with a host of medical complications. The main feature is lissencephaly, or “smooth brain,” where the typical grooves are not present, causing horrendous seizures that strip the child of development. 


We spent two months mourning her diagnosis and learning how to surrender to the unknown. Children with this syndrome don’t tend to live past their second birthday. So, we didn’t know if Eva would survive birth or remain with us for a little while. It literally felt like we were walking into a big white cloud when we entered the hospital at 37 weeks for induction. She was measuring so very small, and honestly, I just wanted to see this little wonder in my arms. Carrying her, knowing I wouldn’t get to keep her, was the most excruciatingly tragic yet beautiful two months of my life. 


Eva shot into the world after a super quick labor. She was surrounded by her father, 7-year-old brother, and my mother. So full of life, her daddy thought a miracle had taken place. Those first tender moments after birth will always be cherished as a highlight of my life. The hospital treated us with such dignity and gave us the freedom to love on our little girl. Eva had big, beautiful dark eyes, and she didn’t close them for her first four hours of life while she took us all in. I think she knew we didn’t have much time. Listening to her tiny cry filled me up inside, and I was a mother again.

Our plan was to provide comfort care and low intervention. We planned to love on Eva as long as we could while she showed us the way. We ended up making the hard decision to do major surgery on Eva’s bowels because at some point she would have difficulty feeding. At five days old, she underwent surgery to have a narrowing between her stomach and intestines corrected. Her intestines were removed, re-positioned, and replaced. The appendix was removed while they were in there because it was in the wrong place anyway. Plus, she received a gastrostomy-button in her stomach, so we could feed her easily since she didn’t suck well. 

After getting Eva’s big brother to school each morning, I would drive up to sit with her all day, coming home at night to tuck her brother in. The boys would come visit her on the weekends. We had a good little routine going. Even with all Eva’s cords and tubes, I would get the opportunity to hold her quite often. But it wasn’t like I could pick her up and set her back down when I wanted, I had to soak her in as long as I could. My record was five hours straight of sitting with Eva in my arms—apologies to my bladder. Watching her instantly nestle into me, knowing she was safe with her mother, brought such comfort to my heart. I longed to nurture this precious angel.  

Eva had pretty much healed from surgery, according to the barium test, and she was having bowel movements again. Her umbilical cord finally fell off, and she made it to four pounds. We were starting to talk about feeding her real food instead of just the intravenous fluids. The last afternoon we had together, she stared at me for a good 15 minutes. Not googly-eyed newborn gazing; she was looking straight into my soul. “I love you, my twinkle star. You’re so brave. You’re so amazing. You are our blessing.” Such a precious moment that I carry with me.

They attempted to get her off the ventilator for the fourth time that day. We were all pretty hopeful because she was handling it the best she ever had. I left a little early that evening to wash her cute bedding. I didn’t kiss her because she was resting so well, and I wanted her to succeed in getting off the ventilator. As I drifted off to sleep that night I thought about how to rearrange our room to best fit Eva and where to hang her dream catcher near her crib. I thought we finally had some certainty on this uncertain journey. Our girl was coming home. 


Suddenly my cell phone, that I now kept at my bedside, began to ring. I figured it was the hospital letting me know Eva needed to be put back on the ventilator. I had received that call before, but this time there was fear in her nurse’s voice. 

“Should I bring her dad with me?” I asked.

“I think that would be a good idea,” Eva’s nurse said.

My husband had been sleeping for a couple hours already, so I drove us to the hospital in the rain, an hour away. I held my tears and fears in suspension as the nurse kept calling my husband, scared we wouldn’t make it in time. I’m still not sure how I walked from the car to Eva’s neonatal intensive care unit room. We arrived ten minutes after she made her grand exit. Eva laid motionless in her bed with the ventilator tube back down her throat. Still warm, but lifeless. 

We snuggled our precious child for four hours as her body slowly cooled and stiffened. It felt like the blink of an eye. I tried to soak in all her tiny details. I memorized the silky softness of her golden hair as I repeatedly stroked her head. There will always be a special bond with Eva’s nurse who cared for us that night. Saying goodbye was so bittersweet. Never, ever did we want Eva to suffer; that was our biggest fear. She did not have to experience a seizure, as far as we know, and for that, I am eternally thankful. 


Silver linings abound within our story, and I could go on and on about those. I always say there is peacefulness in the pain. There will never be enough of her, but with Eva came a huge transformation. These beautiful souls touch down for a moment in time, but they have such a profound impact on the world around them. We live in an era where we can embrace the beauty in the lessons they teach us. This is how I honor my Eva, by sharing our story so others can learn from her life. Eva has shown me, in many different ways, that our spirits are still intertwined and always will be. I find contentment in that.