Amanda’s Story


I became a parent in the fall of 2009. The day held all of the joy and celebration I had anticipated, but equally present were the unwelcome shadows of sorrow and dread. My son was born with a Neural Tube Defect (NTD) called an Encephalocele that was diagnosed in utero. My husband, Derek, and I were offered the chance to terminate the pregnancy at the time, but ending our child’s life was a choice we were unwilling to make. Instead, we knew that big things were in store for our tiny new arrival.

The months between Ethan’s diagnosis and birth were spent planning and praying. We met with a perinatal hospice counselor who helped us develop a birth plan, and we met with our minister who helped us find hope in the darkness that had settled over our lives. To find strength and comfort, I read through all 150 Psalms repeatedly, relating to their bipolar emotions from anguish to jubilation in a way I never had before. I was heartbroken and grief-stricken, but grateful for the new life growing within me and confident that God would make something beautiful out of our loss.


When September 23rd arrived, and Ethan finally made his appearance, I was overwhelmed with the love and wonder that is universal to motherhood. I admired his tiny fingers and toes, and I kissed his velvety pink cheeks. My husband, too, was over the moon with this miniature human who filled our hearts so completely. We welcomed many, many visitors and proudly introduced Ethan to grandparents, great-grandparents, aunts, uncles, cousins, and friends. He lived for two and a half days, and during that time he was surrounded by nothing but love and joy. He impacted many lives during his brief existence, from the hospital staff to strangers who heard about our story and prayed on our behalf.


Our rainbow baby, Tyler, was born almost exactly two years after Ethan. We now celebrate both birthdays, the same week every year. We all miss Ethan greatly, and we realize that there is a hole in our family that only he could fill. We are thankful, though, that he is part of our family. Our time with him was a gift unlike anything else on earth, and he changed our lives for the better.

Ethan’s life taught me many things. He taught me the inherent value and beauty in a human life. He taught me how to comfort the grieving and how to love with all of my heart. He taught me how to depend on God daily for strength and guidance. But most of all, Ethan taught one of the greatest joys life has to offer: he taught me how to be a mother.

It has taken me seven years to truly begin telling Ethan’s story, but I have realized that it is one of the best ways I can honor his life. I hope that in sharing my experience, I can bring hope and comfort to others. I am writing about my journey now at