All is not quite right

Our lives are transformed. Second of two parts.

By Sam Crane

Dec 7, 2000 | The Pediatric Intensive Care Unit showed no signs of tragedy. Nurses moved about efficiently; a doctor of some sort consulted a reference book; a cleaning lady made big, lazy circles on the floor with her mop. The young couple was nowhere to be seen. Their sorrow must have been centered in another room, out on the "floor," beyond the big double doors of the "unit." Maureen, looking somewhat more rested and less disheveled than I, was already back with Aidan, who was still asleep, flat on his back, head turned to the left, arms bent up at the elbow at either side and tiny fists clenched.

Time unfolded into test upon test and doctors with long faces and few answers. The seizures that were stealing Aidan's breath had gradually diminished and disappeared overnight, thanks to the phenobarbital they had given him. But the cause of the convulsions was still unknown. Blood would have to be drawn to check for a bacterial or viral infection, meningitis perhaps, or encephalitis. Brain waves would be measured by EEG, electroencephalogram. A CT scan was ordered, which would penetrate inside his skull and produce an X-ray of his brain. Other tests would be done as well, a bewildering array of procedures, a plethora of strange new words and acronyms.

Maureen was holding our groggy baby, entangled in wires and tubes, when Dr. Gilmartin (not his real name), a pediatric neurologist, stopped by. His specialty immersed him in the intricacies of children's brains and nervous systems and innumerable insoluble maladies, but the daily tragedies -- seizures, developmental disabilities, degenerative diseases -- had not sapped his humanity. A gentle man, he carefully and quickly examined our little son. We couldn't tell what he was thinking, but nothing seemed terribly wrong; at least it did not show in his face. After reminding us of this or that planned test, he was on his way, maybe to see a child in worse straits.

Gilmartin appeared again late in the afternoon with the first test results. The EEG was normal, with no signs of continuing seizures. No acute problems had been found on the CT scan, either: no bleeding, swelling or growths of any kind. This was all good news and the doctor seemed to be emphasizing the positive by giving us this information first.

But all was not quite right. There was some evidence of a problem in the section of Aidan's brain that connects the cerebral hemispheres and allows the right and left sides to communicate with each other. The bridging structure, the corpus callosum, appeared, in the somewhat sketchy CT picture, to be either underdeveloped or missing, though Gilmartin cautioned that this was not the most reliable test and that a more precise diagnosis could be gleaned only from yet another procedure, an MRI, magnetic resonance imaging.

He went on to tell us that, by itself, the absence of the corpus callosum was not necessarily a disabling condition. Some perfectly healthy people lived full and happy lives without the link within their brains; only upon autopsy was the deficiency surprisingly discovered. In any event, there was not enough information to make a clear judgment, something that would have to wait for the MRI.

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