Neuro kids

In early spring of second year, when I began pediatrics, my first rotation, it would still be dark when I walked to my car at 5:30 in the morning. Except for other cars encountered occasionally at silent intersections, and here and there a figure stumbling out of the shadow of an alley, the streets were empty. Preclinical classes had just ended. Friends and classmates of the last 2 years were suddenly spread out in various rotations or studying for board examinations, never to come back together in quite the same way. Yet, heading north on Broadway as I approached the hospital those mornings, one after another green lights stretched out ahead of me and I would feel, more than at any other point throughout the day, how nice it can be to be alone.

I spent the first month in the emergency room and outpatient clinic, where the most devastating presenting condition often seemed to be simply the poverty of the children's families. I remember waiting for a psychiatrist in an examination room with an increasingly violent and reticent 10-year-old who had recently been moved from one foster home to another due to what was euphemistically termed nonaccidental trauma. I hardly remember if the doctor came before I had to leave, but I won't forget the boy's little sister who was along for the ride. Unwashed and quiet, she glanced up from her seat on the floor with a look of tired resignation, incongruous with being 7, before going back to turning the cardboard pages of a picture book meant for infants.

The second month was in the new children's hospital, and the first patient I ever followed on the wards was a teenage boy with a seizure disorder and multiple physical and cognitive developmental problems. He was there for weeks while different medications were introduced, adjusted, discontinued, or held on standby just in case. His father, who had been through it all before, kept track of everything and even listened good-naturedly while I explained things he probably understood far better. Once or twice he told me that he just wanted everything to get back to normal, which, for his son, wasn't talking, or walking, or eating by himself, but it wasn't having seizures every 30 minutes either. Part of me was sad to see them go even though it meant the boy was doing better.

There was another boy, a few years old, followed by one of the other students and being treated for renal failure, who had had a massive intracranial hemorrhage at birth. One day during rounds, someone pulled up his head CT on the monitor in the room. At first I was just trying to remember what was supposed to be light or dark in the picture, and I didn't see what the others were reacting to. Perhaps aided by a word or two from someone else, eventually I realized that the thin strip between his skull and its otherwise dark contents was all that remained, or ever existed, of his cerebral cortex. Someone always left classic rock playing on the stereo in his room, and that day, like all the others, we turned it down and talked about his electrolytes and kidney function as though he would someday get better. Then, if one of us remembered, we would turn the volume back up as we walked out.

Midway through my last week a month-old girl was brought to the emergency department for evaluation of mild weakness and irregular eye movements. Some thought that neurology should have taken her from the beginning, but she was admitted to general pediatrics, and, since it was my turn for a new patient, I picked her up.

The first day we set up imaging with neurology and a full physical examination with genetics. Imaging ended up being all she needed, though, when the brain MRI came back later that afternoon showing an abnormal pocket of fluid. We had to wait until the next morning to have the neurologist tell us what was going on, but in the meantime one of the residents suggested to me it might be an arachnoid cyst. “That would be good,” she said. “They take those things out all the time.”

But it wasn't an arachnoid cyst. It was schizencephaly, the cause of which was not entirely understood and whose prognosis was variable. I was there when the neurology team tried to explain this to her apprehensive parents the morning of the second day. After a brief introduction, the attending physician showed them the MRI on a computer while one of the residents went down the hall for a printed copy. The questions the parents had were hard to answer. “What does developmental delay mean?” they asked. “Will she always be behind or will it only take her longer to catch up?” The doctor said there was no way to know, but that no matter what she would be herself, or something to that effect.

This was just the first of several conversations that day with various doctors during which similar concerns were discussed. In many ways, they were the same worries encountered by all parents coming to terms with the fact that their child will not be spared the uncertainty that permeates all human lives from both the outside world and within. Still, sudden or gradual, I doubt it is something anyone gets completely used to, and, as the day went on, I became aware of the wisdom of the neurologist's earlier words about the little girl always remaining who she was.

Throughout that month I was also becoming aware of why I found myself pulled to the bedsides of neuro kids in particular, regardless of the problem that happened to bring them to the hospital. The line once drawn between the brain and mind is blurring more every day, and, when it comes to neurologic and psychiatric disorders, the distinction between who a person is and the illness he or she has is often equally uncertain. And because struggles of the mind are universal, diseases of the brain will always be, among many other things, uniquely symbolic of our own underlying questions about who we are as individuals, and, perhaps, even the extent to which connection is possible in the shared solitude of existence.

On my last day in the children's hospital, I realized this girl must have just been born when I first started my rotation. I would probably never see her again, and if I did, neither of us would know it. But I might recognize her parents, who always acted as though we were doing them a favor when that was so far from what it felt like. I think everyone wished we had something more to offer, so I understood when, as people were leaving at the end of that first difficult conversation, one of the previously silent residents hesitantly held out in his hand the grainy printout of the girl's MRI and said, “Here, you guys can have this,” as though it were her first prenatal ultrasound, which, in a sense, it was.

• © 2013 American Academy of Neurology