Session 20: Making the Crooked Places Straight, Part One
Our daughter has faced many physical challenges as a result of her rare form of dwarfism. After the joyous milestone of walking was achieved at age four, a new challenge presented itself within her spine.
After waiting so long for our daughter to be able to walk, it was quite concerning to witness an increasing regression in her gross motor skills. All the sudden, she was falling when walking and looking more and more unstable on her feet. We scheduled appointments to begin the investigation of the underlying cause. Our first thought was possibly an inner ear infection could be causing her to be off balance, but that wasn’t the answer. Bloodwork was collected for further tests which revealed a previously unknown condition: Hashimoto’s thyroiditis disease. That still didn’t provide an explanation, just further questions!
Finally, after weeks of being frustrated, I finally took the situation to prayer. The Holy Spirit caused me to remember a conversation with a neurosurgeon from about four years prior following her first flexion/extension MRI. At the time, we were cleared from further neuro appointments unless she began to show signs of regression. Thank you, Lord. Why I didn't start with prayer is beyond me! I guess when something is wrong with my baby I tend to go into full momma-bear mode.
The following day, I reached out to their office to schedule another sedated MRI, trusting wholeheartedly that we would find our answers. We traveled 200 miles with our trachie to the Children’s hospital where we first received our daughter’s diagnosis, the place where we found hope for a meaningful life for our daughter after so much uncertainty in her first year of life.
The MRI revealed, “Cervical canal stenosis and mild cord edema opposite C2.” The scan showed only minimal spinal fluid on one side of her spinal cord (there should be fluid on both sides), most notably in the flexion position. Our daughter required spinal surgery. My momma-heart sank. However, the neurosurgeon was optimistic that we were catching it before any tissue had died and that her recent regression in gross motor skills would return after healing.
The surgery, which was scheduled rather quickly following the MRI, was a success and included a 2x1.5cm of bone being removed from the C1 cervical spine to stop her spinal cord from being pinched. The surgeon also discovered a fascia band (connective tissue) strangling the cervical spinal cord causing further compression. After the surgeon cut the band, the stenosis at C2 and C3 was immediately alleviated.
The entire situation was truly terrifying, yet we were wrapped in supernatural serenity as we leaned into our faith. Our daughter’s recovery went smoothly, and she was back to her joyous self in no time, and back to school with her friends, each of whom had made her get-well cards during her recovery. Reading through those cards each day made the two weeks off from school easier to handle for our social butterfly who truly missed her classroom.
We were grateful for a successful surgery on our daughter’s delicate cervical spine, but this would just be the beginning of our journey as we would soon navigate the long process of scoliosis management. Stay tuned for Part Two because our Travels with Our Trachie is about to log some serious miles.
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