I am a young mother to a child with a "birth defect". I had my daughter Brylee when I was 18 years old. When she was born she had two dimples in the crack of her buttox that you couldnt see an end to. The nurses that helped deliver her noticed this immediately but thought it was no concern and did not inform me about it. My mother was the one to show me. At the time I thought it was no concern. When she was 5 months old we moved to Chattanooga Tn. When I took her to her doctor for the first time up there, the doctor was immediately concerned about the dimples and ordered an MRI and the results were far from what we expected. She was diagnosed with a birth defect called theathered cord syndrome, meaning the spinal cord was tied down instead of free flowing like it should be, and there was a large aracnoid cyst on her spinal cord. They told me it is closely related to spina bifida but not as severe. We were then refered to the Walter Boehm birth defects center in Chattanooga TN for her to see the neurosurgeon. The first time we seen Dr Straight at the Boehm Center they did a complete check up and explained to us what the birth defect was and what would be done about it. We were told that she would need but they usually dont need to do the surgery until she hits a major growth spurt at 15. They made us comfortable and not worry as much as we were. When Brylee was 13 months old we started to notice that she still was not walking and when she tried she would be in so much pain she would start crying and wouldnt stand or try to walk for weeks at a time. When we were still struggling to help her walk we took her back to the birth defects center and they decided that they needed to go ahead and do the surgery. They did the surgery when she was 15 months old on Saint Patrick's day. Almost immediatly after the surgery and we brought her home, she was walking great! The tethered cord syndrome could have paralyzed her if it hadn't been taken care and if the cyst had ruptured. Tethered Cord syndrome is becoming more popular and frequent. I am really writing you to try to raise the awareness about this up coming birth defect that is becoming more popular. I want people to know the signs and symptoms. My daughter will be 4 in October and is running, jumping, flipping and doing everything a normal child can do. The only thing she has different from other children is the scar on her back, that she proudly shows everyone! She still has to see the birth defects center once a year for another 10 years but it is well worth it.
Thank you so much for sharing you and your daughters story. I am glad you found this group.
It can be very scary going throught something like this that isn't very well known even in the medical field. It is also scary that so many disorders, defects and disease that are becoming more common. Awareness is so important keep spreading the word.