Our wonderful son was born with Tethered Spinal Cord Syndrome. Here is our story:
What is that bump on his back?
R was born (quite dramatically) on March 27, 2011.
The first few days, weeks and months afterwards were difficult for me. Despite my own issues, R was my priority. Like most moms, I diligently took R to the various doctor’s appointments for check ups etc. I specifically chose Dr G because of his 40 or so years of experience treating children.
One day as we were changing R’s diaper, we noticed that he had a small squishy bump on his back. I made a note on my phone to ask Dr G about the bump at R’s next appointment.
At his 4 month checkup, I asked Dr G about R’s back. Dr G wasn’t sure what was going on so he sent us for an ultrasound in the basement of his building. Having a “spirited” 4 month old lie still for an ultrasound was definitely a challenge but after a few minutes the technologist got what he needed. Then we waited for Dr G’s call.
Several days after the ultrasound, Dr G called us and told us that he still wasn’t sure what the bump was. It seemed like a growth of fatty tissue but this didn’t give us a fulsome answer. Dr G suggested that we go to Sick Kids Hospital for another ultrasound and an x-ray.
Going to the Hospital
We had to wait several months for the appointments and getting R to be still for both an x-ray and another ultrasound was not fun. At the same time we were worried. We didn’t know what the tests would show and he was so little!
Eventually we were referred to the Chief of Neurosurgery at Sick Kids Hospital. He ordered a MRI for R who had to be sedated for the procedure. We were nervous about the sedation, but were reassured that everything would be ok (and it was).
The Diagnosis: Tethered Spinal Cord Syndrome
Once the neurosurgeon reviewed the images he told us that R has tethered spinal cord syndrome. The bottom of R’s spinal cord didn’t hang free like ours. Instead, it was attached to the fatty bump on his back.
I was very emotional when the doctor gave us this information. Hearing this diagnosis, I was worried that R wouldn’t walk, run and play like a normal child. I was also concerned that I had done something to cause this.