As I said, it was the next day before I was able to hold Ben for the first time. However, it would be a few days before he would even look at me. He slept for three entire days! This meant that he was not eating at all
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. He also had very low muscle tone. After a couple of days, the doctors began to suspect something must be wrong beyond the incredible trauma Ben sustained at birth. That’s when the tests began. After a CAT scan of Ben’s brain was inconclusive, it was decided to do an MRI. In the late eighties MRI’s were not as common as they are today and we actually had to take a “field trip” to another facility to have the test done.
Meanwhile, I was pushing my insurance company’s limits for maternity stays at the hospital, so I was forced to leave Ben and go home. Since I wasn’t released to drive, each day I forced my husband to drop me at the hospital on his way to work so I could stand outside the NICU and just stare at my son. I did, however get to attempt to feed him every couple of hours which was a practice in futility. This was particularly frustrating because he was losing weight and the doctor had made it clear that before going home he not only had to gain back the weight he had lost since birth, but had to be feeding well from a bottle (in this case it was a 2-oz dropper), something my other two sons would have devoured in about 2 seconds when they were a few days old. However, At this point I still could not fathom the thought that there might be something permanently wrong with Ben. I truly believed that he was just feeling the effects of that very bad first day.
Then came the results from the MRI; hypogenesis (or absence) of the corpus callosum. “Huh?? What in the world does that mean? It sure doesn’t sound good.” The doctor then proceeded to tell me that the corpus callosum was the membrane that lies between the left and right sides of the brain. It helps the two sides to communicate with one another. Ben’s membrane was almost non-existent, and without it there could be developmental delay. In addition, it at least somewhat explained Ben’s low muscle tone. Then it hit me. It was very possible that Ben was not going to be a normal child. The doctor said he could not give us a prognosis, because of what little they still knew. At this point we needed to concentrate on getting Ben strong enough to come home. I distinctly remember my next thought. “This is not what I signed up for.”
“Please eat so we can take you home”
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