Carrying a Baby with a Fatal Diagnosis

This is a Guest Post by Kittery Van Sciver

I met Maria a little over two years ago. We were both pregnant at the time, and our due dates were just days apart. My best friend had invited me to a gathering at her house, and she had warned me before to be sensitive and thoughtful about how I talked about my pregnancy around Maria.  You see she was carrying a baby (Gideon) that was going to die. I remember thinking to myself over and over, “I just cannot imagine.” With the love and anticipation I felt for my healthy firstborn, I just could not fathom the soul-crushing pain she must have been going through.

Fast forward a year and a half later. Artie and I were joyfully anticipating finding out the gender of our second child. On July 10th, 2015 we went in for our mid-pregnancy ultrasound, and not 30 seconds into the scan the ultrasound technician told us that while there was a heartbeat, something was very wrong. The doctor came in shortly later and told us words that no parent ever wants to hear: “Your baby will not be compatible with life outside the womb. I am so sorry.”

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With those words, our world turned upside down. What could be so wrong that he was fine inside of me, but he wouldn’t be once he was born?  Our son was diagnosed with a neural tube defect called anencephaly. Sometime during the early weeks of our pregnancy, the neural tube did not close. His skull did not fully form and he had an underdeveloped brain. Upon further research of this anomaly, we learned that some die in the womb before birth, some die during labor, and for those that survive the birth, most only live a few minutes or hours. A few lucky ones might live a few days. And in the rare case, the baby might see a few weeks, months, maybe a year or two.

Those first few weeks after his diagnosis were incredibly tough. I was grieving almost constantly. While my son was still very much alive, I had to grieve the hopes and dreams I had for him. How do you prepare to both meet and say goodbye to your child? It took a couple of months, but after the news sank in that our baby’s life would be brief, new hopes, dreams and expectations began to fill the void where the old ones were. We decided to name him Arthur Neale Van Sciver – his first name after his father, grandfather and great-grandfather, and his middle name is my maiden name. I was determined to make the most of his time with us.

He played in the Davidson College Alumni volleyball game that I have attended almost every year since I played on the team. Friends threw us a wonderful baby shower for him and he even got dressed up for Halloween. We indulged him in the best meals when we had the chance, and he had daily raspberries blown by his sister.

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He came into the outside world in a quick and explosive fashion – we were only in the hospital 20 minutes before he was born. I breathed a sigh of great relief and rejoiced greatly when he was born alive. With celebrated each hour he was with us as if they were years. Oh, he was the most peaceful person I have ever met. Almost everyone who held him said similar things. When we hit the 24-hour mark, we couldn’t believe he was still with us after a whole day breathing on his own. He got to meet and be held by so many of his family members and our friends. We never thought we would get to bring him home, but we did! In his time with us, he never whined or complained. In all, he lived 9 months inside of me and just shy of 46 incredible hours in our arms, and giving him up was excruciatingly painful.

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This experience I have been through is something I pray you never have to go through yourself. But hear me on this – I would not trade a life with Arthur for one without him in it. This boy has changed my life. Who would have thought the littlest and weakest life could have such a grand impact? I have lived so much more in the present, cherishing the people God has placed in my life today. I learned countless lessons in kindness, having been the recipient of so much from people near and far, here and there, known and unknown. I witnessed the church do amazing things for us in our trial, and I tangibly felt God answering prayers of people praying for us. While my heart was stretched as I experienced the greatest sorrow my life has known, my heart also was able to experience the deepest joy, even in the worst of circumstances. And never in my life have I been more excited, ready and thankful for the heavenly home and the reunions that awaits me.

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Read more about Kittery and her journey carrying and loving a baby boy with anencephaly at her blog Holding Fast Hope 

One thought on “Carrying a Baby with a Fatal Diagnosis

  1. “Who would have thought the littlest and weakest life could have such a grand impact?” – Amen sister. Beautiful words. I am so sorry for your loss, Kittery. Thankful God continues to bless you with nuggets of beauty despite this heavy loss.

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