My son was diagnosed with caudal regression syndrome (CRS) three days after he was born. At birth, there were indications of scoliosis, vertical talus and hydronephrosis that made doctors suspicious of an underlying condition so they sent him for an MRI. That is how his caudal regression syndrome was confirmed. They brought him back from his MRI and not even 10 minutes later the NICU doctor, the physician’s assistant, and three nurses all came to his bedside. My heart sunk, knowing this was not going to be good news.
Even then, they did not give me a name for his condition. They said his vertebrae had not formed and he was missing some spinal cord. When I asked them what it meant for him, they replied, “It will be unlikely he will walk. He may take a few steps with crutches, but it will be difficult for him to sit independently and he will not potty train.” Those exact words still stick in my head to this day.
Thank God those predictions did not come true. He is able to walk, run, jump, keep up with the other kids without difficulty. We are still working on the potty training but some progress has been made. I have always wished that I knew then what I know now. Those predictions made me rush through his first year because I just wanted to make sure he got to those milestones that they said he wouldn’t achieve. I will always feel guilty that I didn’t just enjoy him being little as much as I could have. I was so worried about the future. Now I know his future is bright.