Tethered No More



Today’s prompt, tether, is a personal one for me. Typically our daily prompts inspire me to write essays or poems, but not today.

When my son, Jack, was a brand-spanking-new-infant, my mother noticed a fleshy dimple of sorts at the top of his bum, right where his spine and bum met. A first time mom myself and still very green, I didn’t think anything of it. My mother insisted we bring it to the attention of our pediatrician and so at Jack’s one week check-up I did.

Much to my relief, our wonderful pediatrician assured us that it was probably nothing but if it was still there by the time Jack’s first  birthday rolled around, we would need to have an MRI done on it. A neurotic first time mom, I obsessed, googled, googled some more, and then finally realized I had an entire year to wait and I may as well chill out.

Before I knew it a year had passed and my newborn was no more! At his one year check-up our pediatrician rechecked the seemingly benign fleshy “dimple” as I had come to call it and informed me that Jack would, indeed, require an MRI. Before I knew it he had made a call to Children’s Hospital Boston to both a colleague and personal friend (whom happened to be the Chief of Neurosurgery), and we were on our way into Boston. Diagnosed with a tethered spinal cord, we were informed that Jack would require neurosurgery on his spinal cord. A tethered spinal cord is defined as a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachements  cause abnormal stretching of the spinal cord. The syndrome  is closely associated with spinal bifida (which Jack is not afflicted with, thankfully). It is estimated that 20 to 50% of children with spinal bifida defects repaired shortly after birth will require surgery (neurosurgery in our son’s non-spinal bifida related case) at some point to un-tether the spinal cord. In Jack’s case, his tethered spinal cord was caused by a benign Lipoma, a fatty growth at the base of the spine which inhibits free-floating of the spinal cord; thus inhibiting growth (AANS.ORG).  I’m not sure if I was numb, sick, in shock, petrified, or all of the above.

The day of Jack’s surgery was, by far, one of the worst of my entire life. While I knew he was in the most capable hands in the World Class Boston Children’s Hospital, nothing brought me solace. I spent what felt like an eternity in the family waiting room making frequent runs for the adjacent bathroom to vomit. When the surgeon (The Chief of Neurosurgery, mind you) came out to the waiting room to update us he asked us to join him in a private room. I immediately and instinctively refused. Standing in the middle of the family waiting room, in the presence of other families dealing with their own situations, I refused to move, or rather, I was physically unable to move for fear that entering that private room would ultimately be the place where I was doomed to received the worst news of my life.

After much reassurance, our esteemed doctor assured me Jack had done great and was resting comfortably and that he simply wanted to be able to speak at length and in detail about the procedure and recovery.

During our four-day stay on the neuro floor at Children’s Hospital Boston I witnessed God’s work. Not only in the swift and amazing recovery of my own child, (who walked out of the car seat and into the house when we brought him home), but everywhere. Jack had two roommates during our brief stay. Both were young children with cancer and both left cancer free during our stay. To anyone who dare doubt the existence of God in my presence, I counter your dare with a trip to Boston Children’s Hospital, where God is busy working all day.

It’s been eight years since Jack’s surgery and he hasn’t had so much as one complication, Thank God. To that I say thank you to our ever caring, dedicated, and compassionate pediatrician Dr Joseph Asiaf and to The Chief of Neurosurgery at Children’s Hospital Boston, Dr Scott. You are truly Angels Among Us and we are forever indebted and grateful to you.

20 thoughts on “Tethered No More

    1. Thank you. I’m sorry to hear about your little one’s arm. I hope she feels better soon! You’re 100% right, when it comes to our kiddos it hurts so badly to see them hurting and have no control!

      Liked by 1 person

  1. Such an inspirational story. It’s so hard as new moms to recognize every single “danger” so thanks to your mom for pointing it out but what a shock it must have been to find out it was indeed a sign of something that needed surgery. God is watching over us always even through the impossibly hard parts. Great read. Thanks for sharing your experience and beautiful thoughts!


  2. You are your little boy will definitely have an amazing testimony of God’s healing powers to share. I have 2 kids and I would have been a nervous wreck but holding onto faith would have been the only way to get through it. So glad your little guy is doing so well today!

    Liked by 1 person

  3. Amazing post, Katie. My childrens changed my life. A busier life, but it’s a happier life. It truly is an amazing gift. God bless you and your child.

    Liked by 1 person

  4. You are so blessed to have so many knowledgeable drs… my son had been seeing multiple drs at Luries since birth for a slight penile deformity…he also had a funky butt crack with slight lump. His drs always just said it was probably from his deformities in the front and nothing…2 1/2 years later he finally gets his diagnosis after both bladder and bowels are completely nonfunctional from his tethered cord. I wish I pushed harder for answers and I wish my drs took our concerns seriously…we now trave out to Chop for all our care

    Liked by 1 person

    1. I’m happy to hear you’re getting answers. We briefly moved from the East Coast and quickly learned how Blessed we were to have access to the medical care we did. We’re home now and never take it for granted. May your son continue to heal and always have the best care available to him.


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