By Stephanie Schoonover
A few months after we married, Andy and I learned our prayers for our family had been answered. I was pregnant and we were ecstatic. Aside from afternoon fatigue my pregnancy seemed to be going smoothly until our 12 -week anatomy scan. We watched as our daughter stretched her arms and kicked her legs, showing us how much she had grown. The sonographer began taking measurements of Grace’s head, then stopped and said a doctor would be in to confirm what she was seeing. I think she had already seen that our baby was going to die.
Andy and I looked at one another without saying a word. Surely this was normal, we thought. Andy reached for my hand and began praying for our daughter until the sonographer and a doctor whom we had never met re-entered the room.
I assumed the doctor would come in to confirm our daughter’s development, but I hadn’t considered the possibility of an abnormality, or worse, a prenatal diagnosis of a life-limiting condition. The doctor introduced himself and asked if this was my first pregnancy. Yes, our first.
While scanning Grace’s head the doctor occasionally nodded and made quiet requests. He asked to take over and gently pressed the transducer into my belly to get Grace to change positions. Panicking inside, I looked back and forth between the doctor’s face and the monitor displaying my daughter’s silhouette. I hoped the sonographer was wrong and that he wouldn’t confirm my fears. He turned off the display and before he could say a word, we knew.
LEARNING OUR DAUGHTER’S DIAGNOSIS
The doctor looked me in the eyes and began to describe the diagnosis while hot tears streamed down our faces. There is an opening in the skull that exposes your baby’s brain to the amniotic fluid, he explained. It often starts as Acrania, in which the flat bones in the cranial vault are either completely or partially absent; it eventually leads to Anencephaly where parts of the brain and skull are missing. Over time, the amniotic fluid will break down your baby’s brain, making your baby’s life incompatible outside of the womb. I am terribly sorry, he said.
In a single moment my whole world came crashing in and an emptiness carved itself into every hollow of my body. I couldn’t begin to comprehend the news that our baby’s life was going to be taken from ours. How could this have happened? Are you positive? Is there anything we can do? The doctor patiently and compassionately answered our questions until we didn’t know what else to ask. He and the sonographer walked out of the room and told us to come out when we were ready. Slowly, we gathered ourselves and eventually gained enough strength to meet them in the hall. We were being referred to a perinatologist for a 3d/4d scan and a second opinion, although nothing further needed to be said. Conviction had its grip on our hearts and we were going to love Grace with abandon.
We met with my regular OBGYN before we were shuffled out of the office through back hallways and side doors for our next appointment.
COPING WITH THE UNKNOWN
I sobbed off and on, day and night, every day for the following two weeks. The news was paralyzing and left us feeling empty and helpless, but the shock was so strong that there was no room for disbelief that this was really happening.
In the days after Grace’s diagnosis, I’d begun researching neural tube defects in an attempt to understand what the rest of my pregnancy would look like. I would stay up late into the night searching for stories of truth and hope for our journey ahead. We leaned into our pain, called out in faith, and made a conscious decision that we were not going to become consumed by a diagnosis we couldn’t change.
The nature of a prenatal diagnosis of a life-limiting condition is that it creates a yearning to preserve your days as to make up for the future you won’t have. We were facing death and began living life backwards, given every day with Grace was unknown and ultimately limited. How much love can we give? How will we make the most out of our days? How does the diagnosis change things? This is what death asks of you; this is what we began asking ourselves. If the diagnosis gave us anything it was a lesson in being profoundly present and learning how to truly cherish each moment as the gift that it is.
At 14 weeks, we were still processing our emotions but decided to share my pregnancy and the diagnosis with our extended family and friends. Grace’s tiny, perfect soul was growing inside me and I was giving our daughter life the only way I knew. A part of that meant sharing the beginning of a story that was being written deep into my soul. I began sharing on social media our story of a love that runs deeper than the pain, finding happiness in the midst of unknowns, trusting in the plans God has for our family, and giving thanks in all circumstances.
The fragility of life wasn’t lost on me. I was learning that when struck with the unimaginable you will never be the same, you will be changed. You will never love the same, you will love better. Our bond with Grace only strengthened and our love was fierce for her.
One of the best early decisions we made was giving her a name so that we could get to know Grace in the womb. We began capturing professional photo memories of my growing bump, daily candid moments throughout my pregnancy, and even had a celebration of life party. We lived our days focused on Grace until we reached the day we were sure we had lost her.
CARRYING GRACE TO TERM
I was 27 weeks pregnant when we rushed in to the hospital to see my doctor because I hadn’t felt Grace move that morning. We were given a small chance of making it to the third trimester so I was certain she had passed away overnight. I sat in the waiting area of the office amongst blissfully unaware pregnant women surrounding me sobbing once again at the thought of losing my daughter. We waited with bated breath for the sonographer to begin the scan and just as she placed the transducer on my belly, Grace gave a solid kick and continued moving just as she always had.
We felt sincere gratitude for each day we were given to experience her. I began carefully making important decisions for labor, delivery, and the moments following her birth. The monogrammed blanket I would wrap her in, the special scent we would bathe her with, the soft nightgown she would wear, what books we would read, the keepsakes we would make, the photographs we would have taken, and how we were going to honor her body with dignity.
We had dreams of including Grace in our travels and seeing the world through her eyes. She experienced many new places with us, it just looked different than we had imagined. We took her to our favorite spots around Austin, she met her family in Missouri and Ohio, we traveled with her to Spain, Hawaii, and Colorado, and we often went to the playground so Grace and I could swing, together.
Our imperfect life was full of perfect moments and we treasured our days together.
As the Executive Director and Founder of Carrying To Term, Stephanie runs the day-to-day management of the organization and is responsible for the vision and execution of the organization’s mission as it expands across the country.
A Cincinnati, Ohio native, Stephanie graduated from the University of Cincinnati with a business degree and spent her career managing commercial real estate deals for two Fortune 500 companies prior to launching Carrying To Term.
Today, Stephanie and her husband reside in Austin, Texas, where they are devoted parents to their two younger daughters, along with Grace’s legacy, and their pup.
Stephanie can be reached at [email protected].