“Stop. Crying!” I said to myself once again. It had been two weeks since my 18-week appointment, and I was somehow still stuck. As an emergency room nurse, I’ve seen families in shock. So I know the symptoms. No one likes to get bad news. They say you never expect it to be you — that’s true — and when it is you, well, you react pretty much like anyone would.
There hadn’t been a doctor in the office that day, so when the nurse looked concerned and told us to wait for a call, we knew something was probably off. Thankfully, though he hadn’t made it to earlier appointments, my husband, Andrew, was able to be there for the ultrasound appointment and witnessed the look on the ultrasound technician’s face. While I was panicking, he was looking to Jesus.
“Everything is going to be okay,” he said. “We just need to keep praying.”
I started praying.
The Shoe Drops
Soon we had the news. Our son had myelomeningocele, more commonly referred to as spina bifida, and we were to meet with a specialist the next day.
We arrived for our appointment loaded with questions. The more we asked, the less the doctor seemed to know. She brought up statistics for walking, running and other mobile development and talked about how my expectations for any of these activities needed to be low. Most children born with this congenital birth defect never walk. But for all of the knowledge the doctor did have, she seemed at a loss, finally explaining to me that my questions were normal but without data.
“You see,” she said, looking me in the eye, “it’s hard to say because the statistics just aren’t there, so many in your position choose to abort.”
Her words left me reeling. The thought of abortion had never crossed my or my husband’s mind. My husband’s reminder to pray came back to my mind as we returned home.
More complicated prayers were out of my wheelhouse for the time being as I set to work doing my own research about spina bifida.
Not Without Hope
The more research I did, the more words came to mind as I began to talk to Jesus. The doctor had been right — the abortion rate was abysmal, but so were my son’s odds in the world. Page by page the internet reinforced gloomy stories fraught with difficulty. And those stories began to paint a picture of the true reality my husband and I were facing with the birth of our son.
However, what I did learn from the internet was that a specific test I took for neural tube defects showed an abnormal result for the typical spina bifida diagnosis. The result was congruent with a particular form of the birth defect, lipomyelomeningocele, where patients have fewer complications and a broader spectrum of mobility. Unlike most with spina bifida — whose spines are exposed — my son’s spine was closed. This kindled enough hope for me to form my silent prayer into words.
“God, I know Eli has spina bifida — but if it is Your will, please, PLEASE let it be in the form of a lipomyelomeningocele.” Andrew joined me in prayer, and together we prayed fervently this diagnosis for our unborn son.
Finally, the day came for the MRI to see what version of spina bifida Eli had. To our sheer joy, we learned he had the exact diagnosis we were praying for. It meant he wouldn’t require fetal surgery, and I would be allowed to deliver him without having a cesarean. Andrew and I were over the moon with this news and started making plans for the remainder of the pregnancy and for delivery.
Andrew is in the Army, and we had been preparing to PCS — to move pursuant to military orders — a week after the initial diagnosis. So we were set up with specialists in Philadelphia, hours from our new home in Fort Bragg, North Carolina, but it offered us the best possible care for a successful pregnancy and delivery for Eli.
Together and Apart
At 37 weeks, doctors said I needed to be in Philadelphia for the remainder of my pregnancy so I would be surrounded by our doctors when Eli arrived. So, three weeks before his due date, my mom joined me in a hotel room to begin waiting. Andrew couldn’t come along; his duties held him at Fort Bragg.
As the days crept on, the normal anxiety that comes before giving birth began to rise. Not only was I noting every twinge in my body, I was taking in my surroundings, knowing that for the first several hours of my labor, I would be in a hotel room with my mom, praying Andrew would make the several-hours trip in time.
During those long days across state lines, Andrew and I grew closer to each other and to God. We prayed without ceasing for strength, courage and health for Eli. We prayed for each other and over our future.
For 13 days, my mom and I waited in Philadelphia until it happened: My twinges turned into full on contractions. Eli was coming! I labored long and hard. Andrew was granted leave and caught a flight to Philadelphia, arriving before Eli did.
Though the hours felt like days, there were no complications. Eli came into the world pink and crying. And in that moment, all of my anguish and fear over his disability disappeared. My son was healthy enough, whole enough, loved enough, and I was equipped and prepared to fight whatever battles lay ahead of him. After months of fear that I may not be up to the task, I knew in that moment that God had made me ready for whatever challenges my son would face.
Running Toward His Future
It has been two and a half years since Eli came into this world. In some respects the specialists were right. Eli never walks — he runs! Everywhere he goes, on his own two legs, my child runs!
Sometimes I consider what the doctors told me. In those early days, when I searched the internet for answers, I learned most parents choose to terminate the pregnancy when doctors give them the same news we got. I praise God that He never even let that option cross our minds.
God knew long before He created Eli that we would face challenges. However, in God’s name and to His glory, I have watched every challenge so far be met and overcome, and I believe and expect the same for our future.
By Victoria Kelley as told to Hannah Ezell