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.
Since we know a number of doctors, R’s x ray and ultrasound images were sent all over to friends and family in Toronto and internationally. Despite being specialists in radiology and orthopedic surgery, amongst others, most of our family and friends knew nothing about tethered cord syndrome.
When I looked online at tethered spinal cord syndrome all I found were articles by researchers, children’s hospitals and doctors. Most sites were American and suggested that tethered spinal cord syndrome was a form of spina bifida. According to these sites, having a tethered cord could cause incontinence, inability to walk and/or severe back pain.What is tethered spinal cord syndrome? Find out: Click To Tweet
What do we do?
I am not a health professional but from reading the online material I found that there are basically two options if a child has tethered spinal cord syndrome. You can take a “wait and see” approach and hope for the best or the child can have spinal surgery, where the surgeon will untether the spinal cord from the attached tissue.
In Canada, the most common approach is to “wait and see” how the child progresses while watching for developmental milestones and any unusual physical changes as the child grows. This was the route our neurosurgeon chose. He suggested that we watch R for any symptoms and come back on a yearly basis for check ups, tests and further ultrasounds and x-rays.
Some of our family members didn’t agree with this approach. They felt that we should seek a second opinion and prepare for the possibility of spinal surgery. This entire process was so overwhelming and upsetting. We just wanted to enjoy our wonderful child and not worry about if he would progress normally. Ultimately we did not seek a second opinion. We trusted in that the doctors and staff at Sick Kids knew what was best for our son.
One of the reasons I wanted to write this post is for the mothers and fathers of children who are diagnosed with tethered spinal cord syndrome. It is a very scary diagnosis to receive and there seems to be little information online about children with the disorder.
How is R Now?
R’s diagnosis was delivered four years ago. Since then, R has been walking (and running), playing soccer, skating, swimming, climbing, jumping and doing everything else a 5 year old does. R had no trouble with potty training and he has very few accidents. We are grateful that he has not had any pain in his back, his feet are normal and he continues to grow properly. R goes to the neurosurgeon and urologist every year for ultrasounds and check ups. All of the doctors are very pleased with his progress so far.
Not every child is as blessed as R. However, it is important for people facing this diagnosis to know that things can be ok. As R keeps growing we can only hope that he continues to be the healthy, happy and active troublemaker that we love.How is Tethered Spinal Cord Syndrome diagnosed and treated? Click To Tweet
If you have been touched by tethered spinal cord syndrome please reach out. I’d love to hear your story.