Bless the child and pass the scalpel
When their son was born with a severe cranial deformity, Jim and Lori Armstrong put their faith in God and their trust in Dr. Mike Edwards. NEITHER LET THEM DOWN.
The Lord can work IN MYSTERIOUS WAYS.
The fetal head descends into the maternal pelvis too early. It becomes entrapped, causing the baby’s sagittal suture to fuse early. Or perhaps there is the absence of an unknown gene. No matter. The rapidly growing fetal brain seeks a way out and finds the path of least resistance—it distorts the skull into an aberrant shape.Thus a child is born with a head shaped not unlike a football. Only God, in His infinite wisdom, knows why.
Lori Armstrong, the mother of this baby, Samuel, her seventh child, leaves the hospital in Colorado late last fall with a new word in her vocabulary—craniosynostosis—and the grave knowledge that her son will be returning soon for major surgery on his distorted skull.
What are the odds of this happening? The medical texts vary. Some say one in 1,000 births; others say one in 3,000. What difference do odds make when your baby is the one? Lori and her husband, Jim, have six normal, healthy children. Why is this one not normal?Theirs is not to wonder. They are good Christians, Jim and Lori, believers in the divine will as revealed in the Scriptures. Their Lord is omniscient, infallible; therefore, Samuel’s bulging forehead, the narrow width of his skull, the pronounced point of his crown, cannot signify a mistake.His deformity is a trial, a test of their faith.
My faith is strong, Lori thinks. But they are going to cut my baby’s head open and I am scared.
The first surgery, a procedure called a strip craniotomy, is performed in Colorado when Samuel is 12 weeks old. Its purpose is to free the fused sagittal suture, the fibrous tissue that separates the bony plates at the top of the skull, so that the brain can grow in the proper direction. The surgery is a success, medically speaking, relieving potential pressure on the constricted brain. But the surgeon may not have been aggressive enough. The brain continues to grow in the wrong directions.
Samuel’s head shape remains unchanged.
Lori fears for her son’s future. She imagines the taunts of other children, the rude double takes of callous strangers in the supermarket—the boy’s from a cruel culture. It is one thing for a woman with faith to be put on trial; it’s quite another for this innocent babe.
Yet acknowledge Him in all your ways and He will make your path straight.
Jim, a field executive for the Boy Scouts of America, is transferred to Reno early this year. The family moves to the bedroom community of Cold Springs, 15 miles north of the Biggest Little City.By day, Jim manages programs and finance for the Boy Scout’s Sierra District, while Lori handles David, 12, Rachel, 10, Megan, 7, Peta, 5, Anne, 4, Sarah, 3, and the toddler, Samuel. The children run around the spacious home like a small, tow-headed army. Lori can whip up a lemon meringue pie, manage seven kids and talk on the telephone at the same time.One of Samuel’s first doctors told her not to look up information on craniosynostosis on the Internet. Naturally, it’s one of the first places she looked. She’s mastered the medical vocabulary of her son’s condition. She knows that Samuel turns 1 in October; soon, it will be too late to perform corrective surgery without serious complications.
Lori seeks out a pediatric neurosurgeon and discovers there is only one, a doctor from Sacramento, who holds a clinic in Reno once a month.
His name is Mike Edwards.
She has no way of knowing that the man of diminutive stature and gentlemanly demeanor she will meet at the clinic is one of the most respected pediatric neurosurgeons in the United States. There are no Web sites listing the “Top 10 Pediatric Neurosurgeons.” Medicine doesn’t work that way. All she knows is that her son’s future is at stake, and Dr. Edwards may be his last hope.
Dr. Edwards examines the boy, looks at the images of the misshapen skull and sees the same future she sees. He can change that future by completely reconstructing Samuel’s skull. But he also sees something else.
There is an option.
Craniosynostosis is not a fatal condition. Although pressure from the restricted brain can cause neurological disorders and learning disabilities in some cases, the chances are good that Samuel will grow up to be a normal adult, albeit one with an oddly shaped head.
Changing that shape requires a complete cranial reconstruction, a complex operation that may take as long as five hours. There’s a potential for great blood loss during the surgery, and toddlers don’t have a lot of blood to lose. A myriad of other things can go wrong. You don’t open the skull if you don’t absolutely have to. Neurosurgeons have a saying: “You ain’t never the same when the air hits your brain.”
There’s a one in 1,000 chance that Samuel will not survive the procedure.
What difference do odds make when you’re the one?
The option is to not gamble at all.
It’s the option Dr. Edwards usually recommends in such cases. But Jim and Lori Armstrong are adamant. They understand the risks. They know there will probably be a blood transfusion. They know there’s a chance their son might die. They want to go through with the surgery anyway.
They put their trust in the Lord.
They put their boy in the hands of Dr. Edwards.
He, too, has been known to perform miracles.
Yes, he sighs, let’s do it.
Put yourself in the shoes of the pediatric neurosurgeon, the shoes of Dr. Edwards. Imagine the enormous responsibility. God gives Jim and Lori Armstrong a choice. Risk nothing, and their son lives. Risk it all, and their son lives happily—if he lives at all. God puts Jim and Lori Armstrong on trial.
But Dr. Edwards stands in the dock.
He’s the one who ultimately must take the risk.
He’s the one who must meet God’s challenge.
That’s fine by him. Taking risks is something he seems born to do. In one way or another, he’s been challenging God, this omnipotent, infallible being who drives the invisible engine of destiny, all of his life.
Mysterious ways, indeed.
A young boy waits for
his pilot father to return home to Florida from the war in Korea. His father never makes it back. The son honors his father’s memory, becomes a pilot by the time he reaches high school. He dreams of joining the Air Force Academy, becoming a military pilot, just like his dad. He is turned down at the last minute because of the military’s sole-surviving-son clause.
What strange lesson is this?
Why is he blessed with this seemingly innate ability to ride the edge, whether it be in a high-flying aircraft or on a Dunstall Norton motorcycle booming around the Daytona Speedway? He knows not and mistakes his gift for an interest in aeronautical engineering. At the University of Florida, he finds the subject boring, but his path is revealed upon taking classes in the biological sciences.
It’s the Vietnam era, and he enters medical school, and even though he’s offered a pilot’s job with one of the major airlines (many of the other pilots are flying in Southeast Asia), he stays on the path. Noted philosopher and atheist Jean-Paul Sartre once wrote that the best way to conceive of the fundamental project of human reality is to say that man is the being whose project is to be God. Michael Edwards chooses the next closest thing.
He becomes a neurosurgeon.
His talent is apparent at least as early as his first residency. His department chairman orders him to cut out the motorcycle racing. He’s become far too valuable to be injured in a silly accident.
In neurosurgery, Edwards discovers a world on a perpetual edge. Challenge and risk are always present. He masters guided-imagery surgery, learning to fly in the neural passages of the mind. He embraces new technologies like the Gamma Knife—a space-age device that focuses radiation on brain tumors like a laser beam.
During the next two decades, he opens literally thousands of skulls, probing the intricate networks that make up who we are and what we think. He becomes a rising star in the Bay Area medical community, with a reputation that reaches worldwide.
He saves countless lives.
He prolongs the lives of others.
He watches some patients die.
To be a neurosurgeon is to exist in a world that provides little room for error, in yourself or others. If God is truly infallible, then to be a neurosurgeon may be the next closest thing to being God.
It’s not a claim Dr. Edwards would ever make.
It’s simply part of the job description.In the early 1990s, he relocates his practice from the Bay Area to Sacramento, beginning an association with Sutter Health that continues to this day. He is instrumental in convincing the organization to install a Gamma Knife radiosurgery unit, of which he is the co-medical director.Some who work with him at Sutter will say that Dr. Edwards can be a cocky, strutting bantam rooster. He is not one to suffer fools—he’s not allowed to make mistakes, so why should anyone else be? Like most specialists, he has nothing but disdain for the mess that managed care has apparently made of medicine.
Since the late 1980s, when health maintenance organizations began selling insurance policies for less than the cost of the actual care provided, health care providers like Sutter Health have been struggling with physicians over who’s going to make up the difference. Dr. Edwards has made it very clear to Sutter Health administrators that it’s not going to be him. Naturally, this earns the ire of certain health care administrators, at least one of whom goes red in the face at the mere mention of Edwards’ name.
A business development director at Sutter Health inserts the following joke, obviously directed at Dr. Edwards and other specialists who are vocally resistant to the company’s attempts to lower physician fees, into a CEO’s speech before a physician audience:
Q: What’s the difference between God and a neurosurgeon?
A: God doesn’t think he’s a neurosurgeon.
Perhaps not. But after that CEO leaves and the new CEO comes on board, her husband suddenly develops a brain tumor. They may pray to God, but they call Dr. Edwards. The patient recovers and is doing well.
Those who work closest with Dr. Edwards, the nurses on the operating room floor, admit that they have been stung occasionally by the lash of his quick tongue. But they will also say that he’s one of the best neurosurgeons on the planet.
Just ask him, they joke.
But ask him, and he’s surprisingly modest. Responding to a rumor that he’s been selected as one of the top 10 pediatric neurosurgeons in the country, he says it must be because there are only 10.
At the Ride For Kids held in October, an annual fund-raising event sponsored by the Pediatric Brain Tumor Foundation, 500 bikers follow Dr. Edwards on his Honda RC-51 (one of the fastest production motorcycles on the market; old habits die hard, apparently) on a pilgrimage to the Plymouth fairgrounds.
There, under a tent evoking the religious revivals of days gone by, they listen as the father of a 16-year-old cancer patient breaks down in tears as he retells the story of how Dr. Edwards saved his son’s life eight years ago after another neurosurgeon had told him the tumor was inoperable.
He’s like a saint to these people, says one of the event’s organizers.
When Dr. Edwards finally gets up to speak, he seems genuinely embarrassed at all the attention he’s getting. He thanks everybody for coming out and quickly turns the stage over to the kids, many of whom are former patients of his.
Kids like 13-year-old Mitch Baker.
Two years ago, Dr. Edwards removed a primitive neural ectodermal tumor, or PNET, the size of an apricot out of Mitch’s temporal lobe. Twenty years ago, Mitch wouldn’t have made it. But three months of radiation therapy, 12 months of chemotherapy and one session under the Gamma Knife have given Mitch a new lease on life.
“They had to bring him all the way down to death, then bring him back without killing him,” says Mitch’s dad. Ask him if he believes in God, and he’ll tell you that things happen for a reason, that there’s a plan so all of us can be here.
Acknowledge Him in all your ways and He will make your path straight.
There’s a significant difference between operations like Mitch Baker’s and the procedure facing Samuel Armstrong. In Mitch’s case, there was no choice. Without the surgery, he would have certainly died. But with Samuel Armstrong, there’s that option.
To not take the gamble.
It raises the ante of the procedure significantly. The week after Thanksgiving, Jim and Lori Armstrong drive Samuel to Sutter Memorial Hospital in Sacramento. Lori’s mother watches the rest of the kids back in Reno. Predicted bad weather fails to materialize, and a smooth journey delivers the Armstrongs to the Sharing Place, where they spend the night before the surgery. The next morning, in the Sutter Memorial Hospital surgical holding area, Jim calmly rocks his son to sleep."We’ve been remarkably calm through all of this,” Lori says grimly. She snips a lock of Samuel’s hair. Soon, his head will be shaved. He will be anesthetized. Then his head will be opened.Across the hall in the physicians’ lounge, Dr. Edwards, dressed in surgical scrubs, discusses jets with a man dressed in street clothes. Dr. Edwards has flown jets, including supersonic military aircraft. He keeps in close contact with the aviation community; he has friends. He’s taken an F-4 Phantom for a roaring test drive across the Nevada Test Range.
He’s a pilot, as his father was. But he is also something more.
Yes, he tells the man, you can get a used Lear jet for about $5,000,000, but it’s the insurance that kills you. He glances at the clock.
It is 10 a.m.
He should have started preparations for Samuel’s surgery an hour ago.
“The 7:30 case is running into 10 o’clock,” he complains impatiently. Two colleagues sitting at the table listen sympathetically. “It’s a vagal nerve stimulation. It should have taken an hour, and we’re not even in the room yet!”
He storms out of the lounge.
“I’m better,” he says sheepishly when he returns to the lounge 15 minutes later, clutching a can of Diet Pepsi. The 7:30 case is finally finished; the operating room is being prepped. Samuel Armstrong has been moved to the OR; he will soon be deep in an anesthetic slumber.
A pilot must always fly ahead of himself. He must have a strategy but always leave a door open, an option, an escape hatch. When he uses his options up, he dies. Dr. Edwards applies this same maxim to surgery. Since viewing Samuel Armstrong’s most recent CT scans, he’s formulated a flight plan of sorts.
First, using a bone saw, he will cut out the entire forehead, including the area where it protrudes. He’ll then rotate this curved section of skull (imagine a wedge taken out of a melon rind) 180 degrees and set it back in place. It should curve back like a normal forehead.
The new forehead will be higher and wider, so the back of the skull will be modified to fit. He’ll put a hinge in the base of the skull to tilt it up. Then he’ll cut slats in the top of the back half of the skull. This process is called barrel staving. The slats will be expanded out just like the middle part of a barrel to conform to the higher, wider forehead. When the procedure is completed, the added volume will give Samuel Armstrong’s head an entirely new appearance and his brain room to grow.
But it all depends on being able to flip the section of forehead 180 degrees. If that doesn’t work, Dr. Edwards will have to go to Plan B, sawing the forehead in half and piecing it back together. This is an option he hopes to avoid, because it will lengthen the time of the operation.
Thirteen-month-old Samuel Armstrong is stretched out, intubated and anesthetized on the operating table as Dr. Edwards makes his entrance. The surgical team—two RNs, a surgical technologist and the anesthesiologist—are already assembled in the operating room. All that’s visible of the baby is his shaved head, swabbed with Betadyne solution, poking out from underneath the blankets and sheets covering his body. Black guidelines have been drawn on his skull. He is deep in an anesthetic slumber. His eyelids have already been sewn shut to prevent them from drying out.
It is 10:45.
Dr. Edwards examines the electrocautery tool he will use to cut through the patient’s scalp. Resembling a soldering iron with a needle-like tip, it cauterizes as it cuts, sealing the edges of the wound and reducing the amount of blood lost.
“Can you get the Colorado needle instead of the regular point?” he asks one of nurses.
She nods that she will; she’s busy right now.
He injects Xylocaine, a local anesthetic, into the toddler’s scalp along the black guidelines. Small welts pop out of the skin with each injection.
“Do we have the Colorado needle?” he asks again, a whiny tone creeping into his voice. The nurse, who hasn’t had time to get the needle yet, looks up in alarm.
“Can you get it please?”
The whine becomes a grumble. He’s far too irritated for this early in the procedure. He tries not to crack a smile.
He screams in mock outrage, “CAN YOU GET THE GODDAMNED NEEDLE!?”
The entire team breaks up laughing. The infamous Dr. Edwards, providing a little humor at his own expense, a bit of levity to lighten the gravity of their task.
He touches the tip of the electrocautery tool to the boy’s skin. There’s a hiss, a puff of smoke, and the skin splits, the black guideline turns bright red.
The stench of burnt flesh.
He opens a long, narrow cut across the top of the boy’s skull from ear to ear. Dr. Samuel Ciricillo, Dr. Edwards’ medical partner, tugs on the cut with an instrument called a rake. The scalp splits open, revealing the white skull underneath. He continues to pull forward with the rake as Dr. Edwards cuts, until the front half of the scalp is a 4-inch flap of skin hanging loosely over the boy’s face, bloody side out.
It’s deathly quiet.
“The Washoe Indians taught us how to do this,” Dr. Edwards deadpans.
No one laughs this time; they’re too busy.
One nurse works alongside the physicians, providing suction and irrigation. Another keeps the threesome supplied with instruments and sponges. The anesthesiologist keeps a close eye on the boy’s vital signs, particularly the amount of blood loss.
The two neurosurgeons repeat the process on the back half of the skull, tugging and cutting and cauterizing until the scalp is completely removed.
Samuel Armstrong’s misshapen head is stripped down to the bone.
It is 11:45.
Using a stubby pencil, Dr. Edwards draws a line across the boy’s brow, just below the bulging forehead. From the endpoint of the line, he continues over the top of the skull, just behind the bulge. It’s the wedge he’s going to cut out of the boy’s skull.
There are no fancy measuring devices. The doctor eyeballs the whole thing.
He picks up the drill from the table behind him.
“Hold your noses, girls,” he says as he places the drill bit against the boy’s skull. The drill makes little noise as it digs through the bone. Soft white chunks spin up out of the bit. There’s a burnt metallic odor.
He drills four holes, one at each corner of the wedge.
A rivulet of blood mixed with water trickles from the pads beneath the boy’s head, runs down the plastic tarp and splashes on the floor at Edwards’ feet.
He doesn’t see it.
He switches to a bit that saws sideways through the bone. Placing the bit in the first hole, he saws across the brow to the hole on the other side, his eyes intently focused on the bit as it chews its way across the skull. It takes an amazing amount of physical effort; he braces his feet under the table to control the amount of pressure placed on the drill. He continues to the third hole. As he completes the cut, the wedge-shaped piece of skull pops up. It takes very little effort to pry it out of place.
Through the window in the skull where the piece was, the brain glistens, a wet gray-pink lump of tissue. There is surprisingly little spare room in the cavity it sits in. The bone encasing it seems shockingly thin, a sixteenth of an inch. It does not seem possible that this is who Samuel Armstrong is.
There must be something more.
Dr. Edwards turns the bony wedge of forehead 180 degrees and plunks it back in the window he’s opened up in the skull. The bulge, in reverse, now curves back perfectly; he’ll only have to trim the new forehead a little to make it fit.
“I see what you want to do,” Dr. Ciricillo says.
“I figure we have about 25 CCs of blood loss,” Dr. Edwards notes. Up to this point, he’s been able to limit the bleeding. But once the bone is cut, blood seeps through the marrow, and there’s no way to control it. He asks the anesthesiologist, Dr. Anne Thomas, to prepare to add a unit of blood, just in case.
She’s already added a unit, she says.
He’s somewhat taken aback.
Wouldn’t it be more prudent to wait until the patient has lost more blood before adding it? he asks.With a patient this size, it’s my experience that it’s better to be safe than sorry, she answers.There’s an awkward silence.
Dr. Edwards has performed this type of procedure hundreds of times in his 25-year career. He believes the blood loss in this particular operation is minimal. But he didn’t see the rivulet of blood trickle down. One of the nurses did, and she informed Dr. Thomas, who added the unit of blood shortly afterward, based on her calculation of the total blood lost so far.
God, for the purposes of this story, is infallible.
A neurosurgeon is not. That’s why he operates with a team. He is the final authority in the OR, but sometimes, he has to trust the judgment of others.
Dr. Edwards looks around the room, shrugs.
It’s noon, straight up.
The work proceeds quickly. The rear half of the skull must be raised to fit the new forehead. Dr. Edwards cuts the back of the skull at the base, forming the hinge. The skull is tilted up, creating the necessary height. Then he makes four parallel cuts running from the back of the skull to the edge where the forehead has been lopped off. This forms the splayed slats for the barrel staving. A small section of excess bone is grafted in between each slat to create the necessary width.
The boy’s head is now 1 inch shorter from back to front, 1 inch wider from side to side and 1 inch higher.
Room to grow.
Dr. Edwards takes the wedge of forehead and finally fixes it into position. He drills tiny holes around the edges of all the cuts he has made; then he and Dr. Ciricillo wire the entire assembly into place with strands of No. 30 surgical wire. The spindly framework looks more like an abstract mixed-media sculpture than a human skull. The gaps in the framework are filled with pieces of excess bone mulch saved during the surgery. They pull the 4-inch flap of skin up over the new forehead.
It’s a brand new head.
“Beauteous!” Dr. Ciricillo exclaims.
“Ahhhhhh!” the nurses sigh.
The bulge is completely gone, replaced by a forehead that slopes back with a graceful curve. The back of the head is now full and wide.
It is 12:30.
The most dangerous part of the procedure is past. The two neurosurgeons and the first assistant nurse sew Samuel Armstrong’s scalp up; the deathly silence gives way to talk of upcoming marriages, rising power rates and Robert Downey Jr.
Dr. Edwards throws in the towel before they’re finished; he’s completed an operation he thought was going to take four to five hours in half that time, and rank has its privileges.
“OK, thanks everybody,” he says.
An hour later, Jim and Lori Armstrong see Samuel in the pediatric intensive care unit. He’s sleeping peacefully, oblivious to the residual pain that’s to come.
He has a forehead, Lori thinks.
A normal forehead!
The next day, Samuel Armstrong is released from the pediatric intensive care unit. With the help of two nurses, Lori Armstrong tucks her youngest son into bed. A small knit cap covering his sutures sits above his round and swollen face. Both eyes are swollen shut and beginning to bruise. He’s awake, trying to scratch his eyes and nose, itchy from the morphine. His new, perfect forehead is clearly visible, and if you look into Lori Armstrong’s soft, misty eyes, you can see her son’s new future, too.
They say in all good stories a character must undergo a significant change. Dr. Edwards remains the same, the neurosurgeon par excellence, who, when the time and the weather permit, can be seen turning barrel rolls in his Russian aerobatic aircraft in the skies above Sacramento.
It’s Lori who’s changed. All doubt has been removed.
In all your ways acknowledge Him and He will make your path straight.
Throughout the whole ordeal, she put her faith in the Lord.
But she put her boy in the hands of Dr. Edwards.
“It’s a miracle,” she says. She bends down and kisses her son’s smooth head.
These, then, are His mysterious ways.