Such complications highlight the questions that still surround fetal surgery. Which problems can be headed off by early intervention,
and which are unavoidable results of some underlying, unknown disorder? Did the prebirth blockage cause the abnormal tissue
growth, or vice versa? “What’s the chicken and what’s the egg?” asks del Nido. “All we know is that the two seem to go together.”
The aftermath of the second surgery was painful, with repeated infections and return trips to the ICU. Slowly but surely,
though, Anders crawled out of the hole. He hasn’t been back to the hospital for more than a year.
That doesn’t mean life is normal. Anders is on multiple medications. He’s developed more slowly than the average baby and
much more slowly than his big brother. Approaching his second birthday, Anders is just learning to talk and take his first
steps. More distressingly, after his second bout of surgery and the ensuing complications, he lost the ability to swallow.
Sally Wiley said the muscles of his stomach just stopped functioning. For a while, he had to get all his nourishment through
a feeding tube. A year later, though, he was eating nearly as well as any child his age. I have to say, when I saw a snapshot
of Anders in a high chair with food smeared all around his mouth, it was quite a joyful sight.
Sally Wiley says the experience has given her a whole new perspective on the problems that her patients face. “It’s been a
really interesting learning experience. I thought I was always empathetic to patients, but now, I get it. I get the stress,”
she says. “It’s so much more than just having a baby in the ICU. It’s every day, you have something else, something new to
worry about.”
After all is said and done, doctors couldn’t completely cure Anders Wiley’s heart defect, but it’s hard to look at this little
boy and think we aren’t witnessing something remarkable. For all his problems, there’s a good chance that Anders will end
up leading a normal, healthy life. Without that careful probe of Dr. Wilkins-Haug’s needle, he almost certainly would not
have lived a day. Anders had a second chance, before even getting his first glimpse of the world. This is truly cheating death.
Fragile, like the first note of a brand-new song.
—David Bailey
D
R. JOHN PFENNINGER
was in his kitchen on a cold, Michigan winter day. He was looking for a bite to eat when his sixteen-year-old son Matthew
barged in. Dr. Pfenninger remembers it vividly. Matthew was complaining about his eyes. He said he had scratched them, putting
in new contact lenses. “It’s weird, Dad. I’m seeing double.”
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You don’t experience double vision from scratching your cornea, the doctor thought. Holding up an index finger, he asked,
“How many fingers am I holding up?”
“Two.”
“Quit clowning around.”
“Two, clear as day.”
That was Wednesday. On Friday, the answer was still “two.” It was time to visit the ophthalmologist. They didn’t know it then,
as they drove to the doctor’s office over the snowy midwestern roads, but they were starting a descent into hell. It was also
a journey that will make you think twice about the true definition of a miracle. The story I am about to tell you is one I
think of every time I walk into a patient’s room as a neurosurgeon. It is a story I remember when I am about to tell a patient
the worst news of all.
J
OHN PFENNINGER, KNOWN
to friends as Jack, was a family physician with a bustling practice in Midland. He also ran a business teaching medical procedures
to other physicians and traveled the country giving motivational speeches. He had been feeling guilty about not spending time
with his family—especially the two girls and Matthew sandwiched in between. Exactly one week earlier, rummaging around the
basement, Pfenninger had come across a bright yellow radio-controlled airplane. It was not just any plane. This one had a
story. You see, Matthew loved gadgets, loved to tinker. As a child, he was an amateur locksmith and liked to fiddle with transistors
and remote control cars. He had fallen in love with the yellow plane in a catalog, and after much begging, his father agreed
to split the cost. Matt put the plane together on his own. He painted it maize and blue, the colors of the University of Michigan
Wolverines. But it never took off, because Dad wasn’t there to help. It was one thing after another: A bit of rain. Then Dad
was tired; he’d delivered a baby the night before. They needed to run errands—always something.
It was three years later that Pfenninger found the plane under a tarp in the basement. He knew Matt would still be thrilled
to take it out—and he vowed to do just that, that very weekend. But it wasn’t meant to be. Matt was in front of him on that
cold Michigan day, and Dr. Pfenninger could tell that something was wrong.
For Matthew, things started to move fast. An MRI at a nearby clinic found a suspicious mass in his head. A second set of scans
confirmed that Matt had a tumor growing at the base of his brain. There were a few days between the test and the results.
Matt was sitting in class when his tenth-grade math teacher handed him a note: meet your mother by your locker. “I kind of
assumed what it was,” Matt told me. My heart went out to that sensitive teenager trudging past the lockers to hear what he
knew must be awful, unimaginable news. In the empty hallway, underneath the fluorescent lights, he spotted his mother, her
eyes already red with tears. Matt told me, “We just cried and hugged each other.”
Further testing showed that Matt’s tumor was a rare one, called a pineal germinoma, of which there are only about forty diagnosed
in the United States each year. The family was in shock, but the news wasn’t all bad: this was treatable. Dr. Pfenninger took
charge, finding a national expert to treat his son. The operation would be done in New York.
First, though, there was the matter of a long-planned family vacation to Hawaii. The Pfenningers decided to go ahead with
the trip, but it was impossible to ignore Matt’s deteriorating condition. His double vision grew so bad that on a whale-watching
trip, he couldn’t make out anything beyond the boat rail.
Two days later, he was in New York City, awaiting the surgeon’s knife with the wide-eyed priorities of a bookish teenage boy.
“I wasn’t scared I was gonna die, but I was pretty scared that I wasn’t going to be the same,” said Matthew. “I was right
around the top of my class, and I was afraid I’d end up with brain damage, be disabled somehow. But I had a lot of friends
praying for me back home, and I knew God wasn’t going to let me die.”
The Pfenningers went to a Catholic church each Sunday, and Dr. Pfenninger had briefly attended seminary school before pursuing
his medical career. But theirs was not a particularly devout household. Matthew was the exception; even before getting sick,
he spent time each day talking to God. “I was praying a lot,” he says today. “God and I were best friends. I’d walk the dog
and just be praying and talking to him and stuff, going around the block.” But for the first time in his young life, Matthew
was going to have his faith completely shaken.
The operation was seemingly a success—so much so that Matt’s only follow-up care was radiation therapy. The radiation oncologist
told him that the odds of the cancer coming back were a thousand to one. The Pfenningers’ plan had worked, and they had saved
their son. But it wasn’t long before something strange began to happen. As the summer wore on, the normally happy-go-lucky
Matt became plagued with nightmares and sank into a deep depression. Even his return to school in September couldn’t shake
the blues. “I was freaking out,” he says. “I just wasn’t myself.”
In retrospect, it was a harbinger of what was to come. One day a few weeks after the start of school, Matt was scheduled for
a follow-up MRI. Given the thousand to one odds, nobody was really worried. But as they stared into the radiologist’s worried
eyes, the Pfenningers could see immediately that something was wrong.
The new MRI showed four tumors, three in the back of Matt’s skull and another at the base of his spine. Each one alone was
about the size of a golf ball. The tumors were back, and the Pfenningers were devastated. Matt’s mother and father went from
thinking their son had been cured to feeling a paralyzing fear that they were going to lose him. Matt told me, “I still felt
God was there, but I was asking him, ‘You helped heal me once; why did you give it back to me?’ ” Matt got together with friends
from the church youth group and prayed. They laid hands on Matt, and there were a lot of tears in the room. Later that night,
Matt told me he saw a beautiful shooting star—a rare sight, he says, in the Michigan winter. Looking for a clue from the heavens,
he took it as a good sign.
If the shooting star was a good sign, then most of the other signs were pointing the wrong way. The doctors told Matt and
his family that the tumors were growing fast, frighteningly fast. Given their location, another surgery was simply not an
option. Instead, his doctors ordered a course of aggressive chemotherapy. Each session was supposed to last three days, but
Matt’s body was overwhelmed. After the second round of chemo, he had to stay in the hospital for a full week. He was throwing
up day and night and getting near-constant blood transfusions. Matt’s oncologist—the cancer specialist—said his response was
another bad sign; it meant that Matt was getting sicker. As the third round of chemo grew close, Matt asked his father to
try something unusual, something extremely awkward for the older man. Matt asked his father to gather everyone he knew and
ask them to pray.
Pfenninger thought of himself as a man of science. Although he still went to church most Sundays, he had given up his intense
religious faith more than two decades earlier. He wasn’t one to pray, and public expressions of faith made him uncomfortable.
But this was different—this was his son—so he agreed to do what Matt had asked. The next day, everyone who worked at the Midland
clinic and many doctors at Michigan Medical Center, where Matt was scheduled for chemo, found letters in their mailboxes.
“I need a favor,” the letter said. “My son is dying; everything else has failed, and I need your help.”
Fourteen years later, Pfenninger chokes up when he tells the story. “I just asked them to pray with me. I don’t know if there’s
a supernatural force, but I just told them, ‘Some of you are healers; we’ve got to be connected by more than just the mechanical
things we can do.’ ” Matt’s pastor wanted to hold the service in a church, but Jack was firm: it should be at the hospital.
That was where he and his fellow doctors did their healing. That’s where they would ask for help.
There is no question: the role of prayer in health and medicine is highly controversial, and yet it is an irrefutable fact
that many people take the connection for granted. Walk into any church, and you’ll hear prayers for the sick. At most hospitals,
chaplains are always on call. Peer around a surgical waiting room, and you will see hands clasped and voices murmuring, appealing
to a higher power. According to studies, about half of all Americans say they pray to help deal with medical conditions—everything
from chronic pain to cancer.
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They pray for themselves, and even more often, they pray for loved ones. Every doctor knows patients who have asked him or
her to pray for them. And many doctors also pray. I have had patients and their families bless my hands before I walked into
surgery and others who have asked me to kneel down with them in the patient holding area. One family sang hymns for four hours
straight, the entire length of the operation, while I removed a brain tumor from their father.
I have been a physician for sixteen years, and as a neurosurgeon, I’ve spent much of my life peering into a microscope, distinguishing
good tissue from diseased tissue and carving out the problem with sharp instruments and electrically charged probes. I don’t
spend a lot of time talking about faith. I was never formally trained in the interplay between the type of healing we think
of in hospitals and the type of healing that takes place in private, deep in the recesses of our own minds. Yet over time,
I have come to deeply appreciate the place of prayer in the healing process.
A few years ago, this was a pretty hot research topic. There were studies showing that prayer and meditation can help your
immune system and that people who are regular churchgoers tend to recover faster from serious illness. Millions of dollars
were poured into further research—most notably, a study run by Harvard cardiologist Herbert Benson. The Benson-led study looked
at 1,802 cardiac patients at six major hospitals. Three Christian groups were given the names of individual patients, with
group members agreeing to pray for “a successful surgery with a quick, healthy recovery and no complications.”
Now, you may be surprised, as I was, by the results of this study. First off, the patients who were prayed for did no better
than those who received no prayers. In fact, to take it a step further, those who knew they were being prayed for actually
suffered more complications.
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Why? Well, there might be a few reasons. Some suggest that patients who are being prayed for may, in fact, be sicker than
average. That reason, not the prayers, might explain why those patients did worse. It could also be that patients who knew
they were being prayed for felt this extraordinary outpouring of compassion could only be warranted by a profound illness,
and they adapted to fit that role. It is hard to explain, but based on my experience, no study will or should stop people
from praying.
Matt Pfenninger certainly doesn’t think so. He was deeply moved by what his father did. “It was a pretty ballsy thing for
my dad,” says Matt. “He thought he’d be laughed out of town, or maybe just his friends would show up.” But when Matt and his
father arrived at MidMichigan Medical Center in Midland that evening, they were floored. The auditorium, which held hundreds
of people, was overflowing. The crowd was out in the hallway—doctors, friends, janitors, hospital clerks. It was anyone in
the building who knew him, and a lot who didn’t. It was a mixed crowd. Some were church regulars, but there was also a thoracic
surgeon who told Jack, “I know there have been times when I had a patient dying in my hands, and I said a prayer, and something
happened. I know it.” Another doctor there, a man who had worked down the hall from Jack for ten years, told him, “I don’t
believe any of this nonsense, but I came here for your son.” It was an extremely intense and emotional experience. By the
time it broke up, Jack Pfenninger could barely drag himself home, where he collapsed in bed.