Cheating Death (21 page)

For Ragucci, the neurointensive care unit was not a tomb, but a rest station. But was his case just a fluke? While doctors
are often pressed to give odds—
What are my chances, doctor?
—the truth is that most of us hate to make predictions. Patients want certainty, but that’s a lot to ask for.

Ragucci has seen the MRI pictures of his own frayed brain. He shook his head when we brought them up. “I can’t even really
explain, looking at my scans, how I’m functioning,” Ragucci said. And yet like anyone back from the dead, he finds it hard
to imagine that it could have turned out any other way. There’s an edge to his voice when he talks about his parting diagnosis
from Columbia. “Frankly, Dr. Mayer’s prognosis for me was very grim. One thing, and I’ll always remember this, he said at
one point, ‘I should have listened to all the other people in my department.’ He was talking about the people who were telling
him not to take me on as a patient, and this was right in front of my wife.”

In the first years after his return to work, Ragucci often talked with patients about his own experience. Today, he doesn’t
mention it unless they notice the slight unevenness of movement he still displays on his left side. He says he’d rather be
seen as a doctor than as a patient now, and he’s uncomfortable talking with reporters. Still, the experience shapes his own
medical practice every day.

“One thing I do,” he says, “especially with people who can’t talk, is that I always address
them,
look
them
in the eye. I don’t just start up talking to their husband or wife or whoever is with them in the room. I don’t talk about
‘the patient’ or ‘the case.’ ” After a pause, he looks up and starts talking again. “One thing I
am
thankful for, especially now, because I’m in the practice of reviewing charts and admitting patients, is that Stephan Mayer
didn’t have to take me on in the first place. He could have just said, ‘This is too much to handle.’ ”

Mayer could have said the same to Dr. Nobl Barazangi when she called about her uncle, but he took on this case, too. Professor
Barazanji looked dead to the world. Of course, Mayer was looking deeper, and for the time being, he liked what he saw. By
the fall of 2006, when Zeyad Barazanji landed in the unit, there was no hesitation. No effort would be spared. The hypothermic
cooling was begun. The brain monitors were hooked up. Powerful antibiotics were poured through the IV to fight back infection.
A wife with red-rimmed eyes sat by the bedside hoping that her husband would once again be whole.

I will give you a new heart and put a new spirit within you; I will take the heart of stone out of your flesh and give you
a heart of flesh.

—Ezekiel 36:26 (
NKJV
)

I
’VE BEEN A
surgeon for more than fifteen years, but I’d never seen a case like this. I was barely breathing as I watched Dr. Louise
Wilkins-Haug thread a needle cautiously forward, past the bones of the rib cage. The needle snaked past the gray shadowy bone,
up toward the heart. There was no patient in the room with us; Wilkins-Haug showed me the film taken during the operation.
Even so, my eyes were wide and I found myself leaning closer, as I watched the point inch onward. I could imagine the concentration
she must have felt, the fine sweat on her brow. She would have been talking in a gentle murmur, almost to herself, as she
guided the point to its target. I was watching heart surgery, one of the miracles of modern medicine, but more amazing, the
patient was not yet even born.

When we talk about high-tech interventions, fetal surgery is right at the top of the list. It forces us to ask very basic
questions: Who is the patient? Can we even say that he’s alive? When the first fetal surgery was performed in 1981, it shifted
the line between life and death in a strange and wonderful new direction. Up until now, our story has been about cheating
death, about ways to keep the clock ticking to extend the precious moments of our lives. This addresses the other side of
the question: where does life begin?

With advanced medical equipment and the skills that come with repeated practice, surgeons today can fix life-threatening birth
defects with a success rate that was almost unimaginable when the specialty was born in the early 1980s. To take it another
step, “fix” may not be the right word. The handful of surgeons who perform fetal surgery are nipping deadly problems in the
bud and preventing life-threatening conditions from arising in the first place. In doing so, they blur the definition of birth
and of life itself.

The pioneer of fetal surgery in the United States is Dr. Michael Harrison, at the University of California, San Francisco,
Children’s Hospital. In a published reminiscence, Harrison writes that he had been nourishing “a crazy idea about fixing surgical
defects before birth” ever since his first month of surgical training at Massachusetts General Hospital, in the summer of
1969.
¹
“As a green and naive surgical intern, I assisted Dr. Hardy Hendren in operating on a newborn baby with congenital diaphragmatic
hernia (CDH) who subsequently died.” In a case of CDH, the abdominal organs are located too high in the chest, blocking the
development of the lungs. Harrison wrote, “It seemed obvious to me that the baby died because the lung was too small, and
the lung was too small because it was not able to grow adequately before birth, and that the only way to save the baby after
birth was to fix the anatomic defect before birth.”

Within days, Harrison told me, he had written a protocol for a program of animal experiments that would test this radical
notion in dogs.
²
It would be nearly a decade before he could put that plan into action. In 1978, after finishing his surgical training and
a stint doing research at the U.S. National Institutes of Health, Harrison found himself in San Francisco, where a small group
of South African expatriates was experimenting with fetal lambs. Soon, Harrison was surgically creating birth defects in the
lamb fetuses, watching to see what problems developed and then attempting surgery to correct the problem. As he learned more,
he started to work with fetal monkeys; these were more challenging because, like humans, they are prone to preterm birth.

This was a fertile time for research. In weekly get-togethers, Harrison would compare notes with several other physicians
who were intensely interested in repairing birth defects. Dr. Mitchell Golbus ran a clinic that scanned for and treated fetal
abnormalities. Dr. Roy Filly led a group that was establishing a massive fetal ultrasound unit and tracking what happens to
babies who develop problems in utero. The weekly meetings, which take place at UCSF Children’s Hospital to this day, came
to be what Harrison calls the “heart and soul” of the fetal treatment program.

For the first procedure in a human, Harrison zeroed in on fixing a condition called fetal hydronephrosis, where the output
of urine—in a developing male fetus—is blocked. Urine backs up into the kidneys, causing potentially fatal problems, and for
complex physiological reasons the fetus’ lungs also won’t develop. The first operation was fairly simple. Harrison took the
fetus, still attached to its mother’s womb, and made a tiny hole in the bladder. He inserted a catheter that could drain the
urine directly into the amniotic fluid. He then placed the fetus back in the womb and sewed the incision shut. That modest
effort launched a specialty that in cases like the one I saw is bearing fruit as a real, lifesaving miracle.

Fetal surgery is a desperate measure. It’s generally performed only after doctors determine that the fetus would not otherwise
survive long past birth. Seen in that light, the surgery is a way to cheat death. But here it gets complicated. When you talk
about redefining the boundaries of life, it makes people uncomfortable. Questions about life’s starting point underlie some
of the most bitter debates of our time. Many modern religions teach that life begins at conception, at the moment a woman’s
egg is fertilized by sperm. But in the legal world, it is argued a person isn’t a person until they are born. The forty weeks
in between are an uneasy limbo.

As strong as emotions run around the question, in a way it’s like arguing over angels on the head of a pin. No brand-new developing
human could survive outside the womb at the moment of conception or for several months afterward. In the majority of cases,
survival outside the womb is impossible until about twenty-four weeks of gestation, but it’s equally true that intervention
before that point can mean the difference between life and death. Untreated, it was clear that the heart condition of twenty-two-week-old
Anders Wiley would mean almost certain doom. And there I was, watching the delicate surgery that would save his life.

None of these philosophical questions were on the mind of Anders’ mother when she laughingly lay on the table for an ultrasound
in an Austin, Texas, medical suite.
³
A physician herself, an ob-gyn, she was taking a turn as a patient at the practice where she worked. Known to patients by
her maiden name, Dr. Grogono, Sally Wiley was pregnant with her second child. The first, a boy named Dyson, had been born
just nine months earlier. When she’d gone for an initial ultrasound two weeks earlier, Wiley had been deeply anxious. At age
thirty-nine, she knew full well that her child was at increased risk for birth defects, most notably Down syndrome. The test,
however, put her mind at ease. Everything was normal, or so it seemed.

This time, the ultrasound was just for fun, to see how those little fingers and toes were growing. As her favorite technician
swabbed cold gel across her belly, Wiley felt a surge of pleasure, thinking of the new life inside her. Now her friend could
see as well, peering at the screen as the black and gray images came into focus in the darkened room. But something was wrong.
The friendly cooing turned to quiet. Instinctively, Wiley raised her head toward the screen, but of course, she couldn’t see
the details from the table where she lay. Her friend, the ultrasound tech, was still quiet, and then said, “There’s something
not right about his heart.”

From there, it all went pretty fast. Wiley looked at the films herself, and then she had to show them to her regular perinatologist,
but it was mostly a formality. There was indeed something wrong with the tiny growing heart. A healthy heart would be symmetrical,
but in this one, the entire left side was shrunken. A valve releasing blood from the heart was narrow, too narrow. As a result,
there was barely a trickle of blood flowing to the left side of the heart. Without blood flow, that side of the heart couldn’t
grow. The condition is known as hypoplastic left heart syndrome. No one knows what causes it, whether it’s genetically programmed
or somehow caused by some idiosyncrasy of development. Whatever the reason, as the condition progresses, blood flow to the
left side of the heart is slowly but surely choked off. A serious case is always fatal.

Wiley was in shock. “It was horrible. I had been so focused on being older and Down syndrome, I didn’t even think about the
other things that could go wrong. So when [my technician] said there was something wrong with the heart… .” Her voice trailed
off.

Along with her husband Jay, a law student and former political consultant, she was faced with an excruciating dilemma. Her
own doctor said there was a specialist in Boston who might be able to correct the condition, but there was no time to spare.
If it weren’t already Friday afternoon, he would have her on a plane already. But did she want to go? Even if surgery was
successful, there could be massive complications down the road. By twenty-two weeks, the fetus relies on its own growing heart
to circulate blood to the rest of the body. Wiley knew her baby’s developing brain might already be injured by a shortage
of oxygen. There was no way to guess the extent of the damage. Her doctor raised the possibility of an abortion, but Wiley
shot that down. She and Jay had already given the baby a family name—Anderton, shortened to Anders—and he felt like part of
the family.

“I’ve always totally supported that choice,” she said, “and I always thought I’d known what I’d do, faced with the possibility
of serious birth defects. But when I got the news, at twenty-two weeks, there was no question. It was already a baby. Maybe
not legally, but to me.”

That wasn’t all. Ethical and legal concerns aside, surgery would be a risk to both mother and developing child. The conservative
course would be to sit and wait. If the syndrome progressed slowly enough, the heart might still grow; if it grew enough,
the defect could be corrected at birth. To go in surgically now, on the other hand, might be deadly. The slightest error,
the smallest nick of the uterine lining, could trigger premature labor. If she went into labor, Wiley knew she would lose
her baby.

Sally and Jay Wiley felt fortunate in at least one way: A friend whose baby had also had a congenital defect advised them
to get it fixed right away. “It was such a whirlwind,” Jay told me. “You’re just living your life, and all of a sudden you’re
being told you have to hop on a plane that day. But we decided that afternoon to just go all out and do everything we could
to save the baby. To just drop everything and go through with all of it.” By Sunday morning, they were on a plane to Boston.

C
HILDREN’S HOSPITAL IS
part of a huge medical complex, a maze of buildings sprawled haphazardly across the short streets of Boston’s Mission Hill
neighborhood, about a mile from Fenway Park. An overhead pedestrian bridge connects it to Brigham and Women’s Hospital, another
huge building on the other side. At Children’s Hospital, the staff will tell you pretty quickly that the first operation to
fix a congenital heart defect was performed here back in 1938 by a surgeon named Robert Gross.
⁴
Another first took place here in 2001, when a team led by Dr. Wayne Tworetzky became the first in the United States to correct
a heart defect in utero. At the time, Tworetzky called it “the science fiction procedure.”
⁵