He Takes My Heart With Him

Spina Bifida

My husband called back after about half an hour. He had talked directly to the surgeon. He told me the nurse was right. Jack's official diagnosis was spina bifida.

He talked slowly and reassuringly. Yes, a myleomeningecele was the worst form, but Jack had a very mild case. In fact, the surgeon said, it was only spina bifida by default. The opening was at the end of the spine, too far down, they thought, to affect him at all. Oh, he may have some delay in being able to be potty-trained. Maybe he wouldn't be potty-trained until 6 or 7 years old because the muscles and nerves were weaker. But there would be no fluid on the brain. There would be no paralysis. "He has full use of his legs, as far as we can tell. He also seems to have full sensation in his feet and toes, from the tests we've done," the surgeon had told my husband. Spina bifida is not a degenerative condition. However Jack's physical condition was now, it would stay that way.

I listened to my husband and began the trip back from the fear and the grief. It turned to anger. How could that nurse call the house and tell me Jack had spina bifida, with no explanations??? How could she leave out the information that his was a mild condition? How could she be so thoughtless? So oblivious to the feelings a parent has for their child? So ignorant. Why would the surgeon have a nurse call with such unexpected and potentially devastating information? Didn't he understand that we would have questions? That this was something that wasn't even on our radar? I indignantly questioned my husband.

And, later, the reality hit me. Yes, the surgeon's office had acted carelessly. But, it wasn't so much the way the information was presented that hurt me. It was the diagnosis. It was having to say Jack had spina bifida. Before, we could say that he had a saccrocogheal teratoma and it had been removed. Taken care of. Fixed. This diagnosis was a life-long diagnosis. One I would have to say aloud and know that it was forever. Whether or not it was mild, it meant forever having to say that my son had a condition. And it hurt to say those words. Right or wrong, it hurt to admit that my son had something wrong with him. Even worse, it was something that might be my fault.