This little guy will always hold a special place in my heart. His mom and I are elementary school friends whose paths diverted and ended up crossing again. He is a fighter and I will always be in his corner!

Here is Gideon’s story told by mom.

Please enjoy this very condensed version of a very long story…

Trust. Your. Gut.

I think most parents have at least one moment in their lives where they think, “am I being paranoid? Do I really need to worry about this?” I am here to tell you: trust your gut. Every time.

My husband and I were told just a few hours after birth, that our son Gideon had a condition called Metopic Craniosynostosis.Then, at his first pediatrician appointment, his doctor expressed concern that he may have something called Tethered Spinal Cord Syndrome. The ultrasound to check for tethered cord was clear, but Gideon underwent cranial reconstruction surgery at 6 months old to correct the craniosynostosis.

In Gideon’s first year, I questioned everything. I even made his pediatrician look at his toes because they seemed “wonky” to me. The pediatrician assured me that there was nothing wrong with his toes. He even joked that it was ok if boys had ugly feet. He told me that when Gideon started walking, his toes (that were crooked) would straighten out.

Gideon didn’t walk until 15 months. At 18 months we began to worry about his development. He was assessed through early intervention and qualified for several services. At 22 month, he was diagnosed with autism. With all the therapists coming in and out of the house, I was fairly preoccupied. But in the spring of 2021, it occurred to me that Gideon had been walking for over a year and those toes still weren’t in a straight line. I asked a friend of mine, who is known to be very level-headed and not an alarmist, what she thought. She assured me that she didn’t think his toes were something to worry about and said that she thought they were cute. 

But something was eating at me. I had never seen feet that looked like Gideon’s. So at a cranial checkup in June, I asked his neurosurgeon if he would look at Gideon’s feet. He happily indulged me. I nearly fell off my chair when his response was, “let’s do an MRI of his spine.” I asked what we would be looking for in a spinal MRI. He told me there could be things we didn’t know were wrong, like tethered cord. “He’s already been cleared of tethered cord,” was my reply. He told me that the ultrasound done when Gideon was a month old was not 100% accurate. I was furious. “Why didn’t you tell me back then that the ultrasound wasn’t 100%,” I demanded. “Caralyn,” he said patiently, “back then we had bigger fish to fry.” He was right. Preventing Gideon from developing pressure on his brain was a far bigger fish.

Gideon had his MRI, and tethered cord was confirmed. He had surgery to release the tether in February of 2022. It was a very difficult time for us. But thankfully, once we left the hospital, Gideon’s recovery went smoothly.

But here’s the thing: when tethered spinal cord is missed (which is very common), it can cause nerve damage that results in pain and incontinence that can be permanent, with or without surgery. So that nagging in my gut that told me not to ignore those silly wonky toes, was right. So trust your gut. Every time. What’s the worst that could happen? A doctor examines your child and tells you that they are perfectly healthy? Maybe that doctor thinks you are a paranoid parent? Oh well. All the Gideon’s out there, whose parents wouldn’t rest until they were satisfied with answers, will thank you.

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