We’d been gone almost two weeks, but I hadn’t gotten very far with the trial. The fact was, ever since we’d left Victoria, I had a conflict that I hadn’t anticipated. How could I buckle down to the assignment I’d given myself when what I really wanted to do was fret about the next stage of our journey? Which was more important, the thousand and one uncertainties of the trip or the single mystery of my father’s trial?
Lots of other people had sailed around Vancouver Island, so maybe the trip wasn’t that big a deal. On the other hand, nobody knew or cared about the struggles of a feverish infant surrounded by doctors and nurses in the wee hours of a Labour Day weekend thirty-five years ago, so maybe that wasn’t such a big deal either — except that I knew there was a story there that was every bit as compelling as pushing yourself around an island. But I had to care enough about it to put the hours in when I’d rather be clearing my mind for the next leg of our trip.
What I wanted out of it was pretty clear. It was the thing most people spend their lives trying to figure out, namely what made their parents tick. It amounts to a responsibility: you’ve got their genes, so you’d better find out, because those genes are coming to get you. And there’s no better way to do that than to look hard at what happened when they were put to the test. Most of us don’t have the documentation describing life-altering crises that might have befallen our parents, but I did. I couldn’t back away from the chance I’d engineered for myself by doing all that background work on cerebrospinal fluid and children with big heads.
I decided that, like the sailors who fritter away decades getting ready to go offshore, I was suffering from “over-preparation syndrome.” All I really had to do was extract the day-to-day story of Billy and his doctors and tell it. Beginning at the beginning. So I started reading again, in Refuge Cove, to find the bare bones upon which so many layers of meat would be hung. For starters, who was this kid?
Billy was born of an unwed teenage mother who immediately relinquished him to a childless couple keen to adopt. How much of Billy’s subsequent travail was written in his genes, how much was caused by events right after he was born, and how much by events in the O.R. eleven months later? This was what my father’s trial boiled down to.
Billy already had two strikes against him. The first was prematurity; he weighed just three pounds when he was born. The second was lack of oxygen because Billy didn’t begin to breathe for three minutes — an eternity. Within hours, he was in a respirator in intensive care, a tracheostomy tube poking from his tiny neck. I thumbed through the charts and imagined the premie ward, the row of struggling babies in their plastic boxes, the swish of starched white dresses, the squeak of rubber-soled shoes.
His lungs gradually cleared, but his head circumference began to be a worry. When Billy was finally discharged to his new parents six weeks later, the family doctor told them of the possibility of hydrocephalus. “I advised [the adoptive mother] not to sign adoption papers right away,” it says in one pediatrician’s notes. But she was adamant.
Six weeks later, Billy was re-admitted. His head was getting too big, too fast. My father’s first appearance in the file is a brief consultation record; he ran his tape around Billy’s head and got forty-six centimetres. I put down the file and grabbed my own tape measure from the tool kit.
“Charles!” A click of toenails on the deck, and a pair of eyebrows emerged around the corner of the cockpit.
“Hold still.” Charley’s head was thirty centimetres, deducting a couple for the squashed ears. He pirouetted, trying to snatch the tape. I wound it around my own head: fifty-nine. So, somewhere in between. I looked around the boat: the fire extinguisher on the engine bulkhead was about right. Pretty big for a six-week-old child.
My father did a ventriculogram and diagnosed “communicating hydrocephalus.” Five days later, he inserted the standard hardware of the time, a shunt that diverted the excess fluid from Billy’s brain to his heart. The report of operation is a terse three paragraphs: burr hole in the side of the head, expose the jugular vein, catheters into the ventricle of the brain and the atrium of the heart. A run of tubing in between, and a Holter valve, all sutured with silk. It was June 1976.
I read this laconic narrative over and over. This was what my father did for a living. Inserting a shunt, don’t forget, was somewhere on the low end of complexity for a neurosurgeon. But for a baby? I thumbed my way back to the admitting record: Billy weighed in at 4.5 kilograms, almost ten pounds. No longer the size of a newborn but still a small target for the doctors and nurses bending over him. Charley weighed twice as much.
Now that Billy’s first operation is over, let’s let the nurses tend to him. We need to take a closer look at the shunt itself — because it’s about to become a victim of the second law of thermodynamics.
***
The great thing about my father’s little library of scientific papers, some of which I had brought along, was that it was roughly contemporary with Billy’s case. I learned that the chances of surviving hydrocephalus were pretty good back then, but definitely not plain sailing. I found some interesting statistics from 1983 (nine years after Billy’s operation): mortality in treated — that is, shunted — patients was still 7 percent. And only half of the survivors had normal mental function.
This pile also shed some light on the difficulty of a standard shunting operation. To me, just placing the burr hole looked like a nightmare. Then you had to make it through the various layers wrapping the brain, cauterizing as you went so as not to provoke a bleedout later. And then, after advancing your catheter halfway into the brain, you had to penetrate the lateral ventricle just so. It looked to me like trying to drill a hole through one side of a chair leg and have it come out exactly where you wanted it on the other side. It never does, but chair legs don’t hemorrhage to death in front of you.
Then there was the other end of the shunt to worry about, the drain into the heart. This seemed to me like going from the frying pan into the fire, surgically speaking: enter the jugular vein by sneaking in through the facial vein and pass the slender tube down into the right chamber of the heart. In 1974, you could only tell where the end of the tube was waving around by connecting it to a pressure-measuring device and gingerly advancing it until the pressure readings balanced out.
Yet shunts could turn out very well.
“There is no reason,” wrote one surgeon, “that the child with hydrocephalus who is treated early cannot lead a normal life and have a normal-sized head.” But then I read the caveat: “Unless there is an underlying brain impairment, congenital or acquired.” And I thought of Billy and his small army of experts and lawyers, and the glorious grey area those few words opened up.
When shunts did go wrong, the biggest reason was infection. Around the time of Billy’s operation, your chances of a surgical redo were 50 percent. Very few writers had much advice on what to do if pressure shot up when an infected shunt was removed — yet this was the crux of the case against my father.
I felt comfortable with these old scientific papers, probably because they talked the language of experimentation and statistics that I was familiar with. I knew not to put too much faith in any single report, but my father had compiled a pretty comprehensive snapshot of hydrocephalus and its complications from a few years before the time he operated on Billy to a half-decade later. It was like a scientific time capsule. All the papers were heavily marked up, with highlighter (again in his favoured orange) and his own handwriting. My father really was preparing for battle.
Bit by bit, I began to discern his strategy: from the moment Billy was born almost two months premature, his risks just kept multiplying. John Harvey’s argument would be that a high-risk infant had received a high-risk operation for a condition that was extremely common in low-weight babies. The outcome was bound to be iffy, and it was impossible to tell whether the subsequent problems had anything to do with the surgery at all. One 1983 study he’d photocopied looked at nineteen such children; two died, and only two were neurologically normal at one year.
Asleep on the cockpit seat next to me, Charley was half-buried in paper. I felt buried too. Charley whimpered, looked up, then went back to sleep. I knew what was coming.
“You’re making it much too complicated.”
It was getting dark in Refuge Cove; I hadn’t noticed him in the gloom. He looked especially ghostly.
“Nobody wants to read all that stuff about survival rates.”
“Who said I was writing anything?” I didn’t mention the book he had kept trying to write.
“You have to keep it simple, or you’ll lose your readers. Get back to Billy’s story.”
“Simple, as in . . . ?”
“As in, hydrocephalus in premature infants caused many problems, even without the complications of shunts and infections. That he was anoxic for the first three minutes of his life. That the deck was already stacked against that little boy.”
“That’s exactly what I plan to say! I do know how to write.”
“I was a good writer too, you know.”
“Yeah, but this book — assuming I’m writing a book — isn’t about you. I mean, it might be, but . . .”
“That was uncalled for. A person in my position, I couldn’t be waving my own flag. If you’re going to do it, you have to do it right.”
“Maybe you should have waved your own flag a bit more. Truth and justice don’t always prevail, you know.”
“Well, I thought they should.”
“Again? ” called Hatsumi from below. “Aren’t you ever coming to bed?”
“I’m coming, I’m coming,” I said. “And don’t worry, he’s gone. I think I hurt his feelings.”