Psalm 139:13-16

I have to be honest, the decision to share our story has not been an easy one. Our family is still processing each piece of this journey and the rollercoaster ride is not over, but there has been a constant tugging at my heart to pour into others through our experience. My purpose for this blog is not to gain sympathy but to provide hope and joy to families facing similar challenges.

Our journey started in August of 2017. Our family of three was growing! We were so excited and overcome with joy as this child was something my husband and I prayed over for months.

Fast forward to December 19, 2017. A date forever etched our minds. We will call it diagnosis day.

My husband, Chase and my daughter, Charlee (3) arrived at my OB/GYN clinic for our 20 week anatomy scan. We were overwhelmed with excitement and could not wait to see how baby boy was growing. Our excitement quickly turned to fear as it was then we knew something was wrong. The sonographer was quiet. The room grew stale. The gel on my belly suddenly felt ice cold. I noticed the sonographer focusing intently on Cash’s spine, but the sonogram ended and we were ushered back to our room to wait for the doctor.

We waited for what felt like an eternity. Finally, the nurse practioner came in and said “everything looks great, but we want to send you to a specialist to look at his spine”.  My heart stopped. With a lump in my throat, I said, “wait, you mean to check for Spina Bifida?”. I didn’t get a straight forward response to my question, but we could see in her eyes something was wrong.

We left the office frantically and rushed across town to the high risk doctor for an additional scan. Meanwhile, I’m googling and getting a crash course in Spina Bifida from the passenger seat. How could this possibly be? How could this happen to us? I remember questioning everything I did the last 20 weeks, but nothing was out of the ordinary. It just didn’t make sense to me. Surely this was a mistake!

We made it to the specialist’s office where a series of ultrasounds were performed. We waited and waited (this time it really did take forever). Finally, the doctor came in and confirmed Cash’s diagnosis. Cash did in fact have Spina Bifida.  The doctor proceeded to tell us our options, but not before he boldly stated that 75% of children diagnosed with Spina Bifida are aborted. He mentioned the research on their quality of life wasn’t great because so many are aborted. Termination wasn’t an option for us. Fetal surgery was presented to us as an option, but it came with risks to my health and Cash’s health. We decided fairly quickly that with God by our sides we were ready for battle. Unfortunately, finding a specialist that supported our decision wasn’t easy. On the 3rd try, I found a physician who was not only optimistic about Cash’s future, but very supportive. She reminded me that God is in control.

The next twenty-something weeks were a complete blur. Chase and I went through every emotion possible while we were followed closely by doctors. Not only did we see an OB/GYN but also a high-risk obstetrician weekly for in depth sonograms to monitor Cash’s development. We kept the diagnosis pretty quiet as we were trying to process everything ourselves. Through the questions, confusion, and heartache, we found comfort in God’s word. Specifically, Psalm 139:13-16.

“For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them” (Psalm 139:13-16)

In my next blog post, I will share our birth story and some of the NICU rollercoaster ride.

-Carly