Inside Duke Medicine

Angela’s Graduation

By Jeff Swanson, Ph.D.

I sit by an open window in a classroom with carved oak walls. It’s 1985. I’m twenty-eight, in the thrall of novel ideas and the awakening smells of April in New Haven.

Inside the seminar room, a visiting professor of health care policy is diagnosing the social ills of medical practice in the United States. “We’re spending an unseemly public fortune on the extreme ends of the human lifespan,” he says, “and we’re ignoring the population in the middle.”

Extremely premature neonates are being “salvaged”—at vanishingly low birth weights and ever younger gestational ages—at great human cost as well as public expense.

“The hard truth about premature infants,” the professor goes on, “is that too many of them are brain damaged and severely handicapped. So the full costs of the new intensive care nurseries will only accrue as these survivors of traumatic birth grow up to be a continuing burden on their families and society.”

A lively discussion ensues about the relative merits of cost-based versus ethical arguments against futile care.

I throw in my lot with the side arguing from the principle of “distributive justice.” I glance out the window and think about graduating from here. A shaft of late-afternoon sunlight illuminates a new sprig of ivy, mint-colored and fragile in a spring breeze, clinging to an irrefutable limestone wall.

•••

Her water broke shortly before dawn. “I’m only twenty-eight weeks,” she said. “It’s not what we want.” She was crying.

We spend two nights and days bracing for the inevitable. On the second day, a special visitor arrives. It’s Dr. Raymond Duff, an avuncular neonatologist who also teaches medical sociology in my department.

“You may not realize this,” Ray intones, “but the two of you have a choice to make. If you don’t say anything to the doctors, your baby will go into the NICU and be put on a ventilator. The doctors will take over, and then they’ll do what they are trained to do. Maybe everything will turn out fine. But maybe it won’t—there’s no guarantee. Your baby could be severely handicapped. We just don’t know. The point is you do have a choice. If you want to, you can say your baby is not going into the NICU. You can just hold your baby in a rocking chair with a blanket and let nature take its course, like parents have always done.”

Then our baby is born. She is intubated and whisked away. We see Angela hours later, a tiny doll in a Plexiglass box hooked up to monitors and machines like an appliance.

A kindly man with a shock of curly grey hair steps up behind Pam and me, puts his arms around our shoulders. “I’m Syd Spiesel,” he says. “I’m Angela’s doctor.” It is the first time we’ve heard anyone utter her name out loud. This tiny person has a name. And her own doctor.

“You have a beautiful daughter,” Syd says. “She’ll be in here awhile, but I think she’s going to graduate.”

During the long ordeal of Angela’s hospitalization, we come to lean on Dr. Spiesel. He is there at all hours of the night, week after week. He makes the decisions that are his to make, and helps us frame the choices that are ours. But most importantly, Syd is present.

Before a year passes, we visit another doctor, a specialist in pediatric neurology, who confirms our worst fears. “Your child has cerebral palsy,” he says. We wished Syd could have been the one to tell us. But we’re in another place now. Another planet.

•••

On the website of the history department of St. Andrews Presbyterian College, there’s an award citation. It says, “Junior Angela Swanson captured the Blair Turner award for distinguished research and writing during the 2006-2007 academic year.”

I wish I could travel back in time and show Angela’s prize to Ray Duff and the health policy seminar in graduate school. I want her to meet Syd Spiesel some day. They would like each other.

This coming Saturday, Angela Nicole Swanson will drive her powered wheelchair across the stage at St. Andrews Presbyterian College in Laurinburg, North Carolina. In the company of her family, her friends, and her fiancé, Angela will receive her Bachelor of Arts diploma, graduating with honors.

Angela, this is for you.

Congratulations.

Note to readers: Angela graduated May 3, 2008. This essay is excerpted from a blog post at http://blindinginsights.blogspot.com. Swanson is professor of psychiatry and behavorial sciences at Duke University.